People call me brave and strong and inspirational. Generally speaking, I don't believe these compliments. I am simply trying my best to live a normal life in the face of great adversity, and there are tens of thousands of other patients and caregivers doing the exact same thing every day all around the world. There are hundreds of my blog readers who are just as brave, strong, and inspirational - they simply choose to battle quietly.
Furthermore, I know that all of you who've not been touched by tragedy, when challenged, would behave much the same as I have done.
That said, this week I do feel awfully brave. I am proud of myself. This week I feel like a grown up. I am wearing my big girl pants.
It all started Labor Day weekend. I was having some girlfriends over for brunch and, like any hostess, was rushing around trying to get things in order. Everything had to be perfect, and I was down to the wire. I was rushing around hiding dog toys, putting away laundry, finishing a quiche, arranging flowers. Running these last minute errands, I was running up and down the stairs a lot, and I noticed I had to sit down and catch my breath after each trip upstairs. I felt weak and short of breath. I thought I was perhaps coming down with a flu.
Over the course of the next several weeks, the breathlessness got worse. Lying in bed at night, I would cough uncontrollably. Coughing would wake me up in the middle of the night and I could hear wheezing in my throat. I sounded like I was 90 years old. My dog looked at me with concern and sniffed my face after my coughing fits. Something was wrong.
Monday, September 17th I was due for my third infusion of this new drug cocktail - Herceptin, Docetaxol, and Pertuzumab, and we were getting wonderful news so far. This drug cocktail was working! Over the course of several weeks my tumor markers had fallen from 1,133 to 387 and from 8,813 to 2,762! I was optimistic and encouraged. I was losing my hair, I was coughing and wheezing and feeling sick, but all of this was totally worth it if it meant I was winning!
I expressed concern about my breathlessness to my doctor in the hopes that she would have some prescription medication she could give me to quell the cough. I had tried Vick's Vapo Rub, I had stood in a steaming shower and had taken eucalyptus baths. I was thinking of investing in a humidifier. Nothing had worked so far.
The cough that I thought was not a big deal, apparently could be a big deal, because the doctor got very serious, cancelled my Monday infusion, and booked me for a series of tests on my heart and lungs instead.
The next morning at 7am, I showed up for an Echo cardiogram (read ultrasound) of my heart. I have had Echos before and always passed with flying colors. I saw this as a precaution and was looking forward to receiving my miracle drug on Wednesday after passing this silly test. I drove myself to the appointment. I don't even think I told Big Man or mom about the appointment because I simply assumed it was a precaution. Boy, was I wrong.
Two hours later, I was in an ambulance being rushed to Brigham and Women's Hospital for emergency heart surgery.
The Echo technician told me I had fluid around my heart, also called a pericardial effusion. The fluid was pressing on my heart, making it difficult for my heart to beat, which explained my breathlessness and general fatigue. I was in a daze, more concerned about what was going to happen to my car that had been left at the Echo location than what was going on in my chest. I was strapped onto a guerney, and reluctantly asked the EMT to pass me my cell phone. I said to the EMT, "I suppose I should call my husband and my mom, huh? This pericardial whatever is going to take probably a few hours to handle, right?"
He looked at me like I had three heads and responded, "Yeah it's going to take at least all day today, ma'am."
"Really, all day? Are you sure? Because I really don't want to have to call in sick to work? I had a really full day."
The EMT looked around the back of the ambulance in the hopes of finding some help dealing with the insane cardiac patient. "Ma'am, you are being rushed to the hospital for emergency heart surgery. I think you need to take a day off work. You should probably call....everyone."
Emergency heart surgery? What in the world? I'm 29! I feel fine, I swear!
It wasn't until I started making phone calls that reality set in. As I spoke to Big Man and said, "You need to come to the Brigham. I have fluid around my heart." That was the moment when my voice cracked and I broke down. The EMT looked relieved.
Big Man fled from work, his boss agreed to dog sit (we love you, Bee!), my mom was booked on the next flight from Baltimore to Boston.
Just when we thought progress was being made in my fight against cancer, it turns out this sneaky beast had gotten right to the heart of the matter. My cancer has metastasized to my heart. Even though the drug cocktail was working on my liver so beautifully, it is possible for a drug to work on one organ and not on another. Doctors called this a "mixed response."I had been afraid of cancer for years, but never before had the fear struck so deeply, and felt so serious. I had cancer in my heart? I didn't even know that was possible!? My heart, the very thing that makes me this small, passionate, headstrong young lady. My heart, that beats so strongly when I get hugs from my husband. My heart that feels like its going to burst when I watch my niece Annabelle waking up from a nap. My heart....the door to my soul, my very essence, that thing that we just assume will always keep beating. My heart has cancer. Wow.
The doctors put a drain into my pericardium - the thin lining around my heart. They drained out 600 millileters of fluid. The young residents were in awe of me, "how were you doing yardwork and taking the dog for a walk with 600 mL around your heart? I'm surprised your still standing! Man, 600mL." The cardiac surgeons were more professional, "You had a 'rather large' pericardial effusion."
To make matters worse, during my heart surgery and the battery of tests before and after surgery, they saw a build up of fluid in the sac around my lungs - that would also need to be drained.
I had two surgeries and spent more than a week inpatient in the hospital. The whole week was a complete blur. I went into the hospital a "relatively" healthy 29 year old who had just spent Labor Day weekend sitting poolside in a bikini. I left the hospital with a clear plastic tube hanging from the right side of my abdomen. A permanent drain that was inserted into the lining of my lungs. It will clear out any more fluid from my heart and lungs that the cancer deposits there. I suppose I should load up on one-piece suits and finally part with those midriff baring cut-off t-shirts I have held onto since college!
I also left the hospital with a new appreciation for how I do NOT want to spend my last few months of life. I want to fight this cancer with all that I have. I want to exhaust every possible clinical trial and FDA approved drug. As long as I can stay in fighting form, I will fight with all the might my impaired little heart can muster, but I do not want to end up saying goodbye to my family from a hospital room, in a strange itchy bed with lots of beeping machines, fluorescent lighting, and no view from the window to speak of, where the only company is coming from Dr. Phil on the small tv screen in the corner. No, I want to say goodbye in the comfort of my own home, the home that I have fought so long and so hard to establish with my Big Man. My home that is full of my smells and my love and my sweat and tears. There is really no place like home.
I am home now and am so happy and content. You all aren't going to be getting rid of me just yet. I am getting comfortable with this Pleurx drain. I can empty it myself now and it doesn't hurt as much as when they first inserted it. More importantly, now that I am actively draining this fluid, I no longer get breathless or cough uncontrollably. I am starting to cook and clean and play with the dog as before. Also, oddly enough, even though my heart and lungs almost gave out on me last week, my liver is functioning beautifully! I have been accepted into a clinical trial! We just started this week and I'm feeling really optimistic about the sounds of these drugs. More to come on that front as we learn more in the coming weeks, but just know that I am still fighting.
Next weekend is the 2012 Susan G. Komen Washington DC 3-Day. With the support of an incredible organization called Check Your Boobies, a non-profit organization I started working with last year that educates women about breast health in a frank, fun, and fear-free manner, I have reached my $2,300 fundraising goal! My mom, my younger brother, my uncle and cousins, my dear friends from Concord, MA, from Baltimore, MD, and from Florida, we are all walking together on team Million Dollar Babies, and come hell, high water, or even heart surgery, I will be walking with them! I leave this Wednesday evening for the DC walk. I get tired really easily as I am still recovering from the surgery, so I'll probably only walk a little bit each day, but I plan on crossing the starting line Friday and crossing the finish line every single afternoon, hand in hand with my family and friends. I'm still here, still fighting, still loving, laughing, and, above all, I am still living... fully.... with cancer.
As October begins, a new chapter in my cancer journey has also begun. Yet again I am humbled by this disease. Yet again, my journey has gotten even harder, and yet I've come through it and found myself back at home surrounded by love and comfort and I'm feeling good when I wake up in the morning. I don't know how or when this story will end, for a minute there in September I thought my story was over, but because of Pleaurx catheters and good doctors and clinical trials that all of you have made possible, I'm still hopeful. I still have a little more time. I'm not giving up.
I hope none of you give up either. If I can continue to cook dinner, work full time, and strive for a personal best on the Susan G. Komen 3-Day, surely each of you can do something with your day or with this month, or with the rest of this year that will positively impact the fight against cancer.
I can't wait to update you at the end of this month with good clinical trial news, because I know my heart is strong enough to fight the cancer that has taken up residence there.
Showing posts with label metastatic breast cancer. Show all posts
Showing posts with label metastatic breast cancer. Show all posts
Sunday, October 7, 2012
Tuesday, August 28, 2012
Moving Forward Past Heartbreak
This summer has officially been the hardest season of my cancer journey. After seven years battling, I thought I had seen it all. I thought I could handle anything thrown at me in that doctor's office with grace and power. I thought I had already dealt with and learned how to overcome disappointment and setbacks. I was wrong.
Cancer has taught me several new lessons this summer. Learning has been painful, isolating, discouraging....heartbreaking.
My niece, Annabelle, was born with a full head of beautiful brown hair, brilliant blue eyes, and charmingly fat cheeks on April 5th. I was there to greet her, which was so special! You won't see pictures of baby Annabelle on this blog as she isn't my baby to share with the world, but I must say, she's the most gorgeous baby I've ever seen. I may be biased though.
On April 6th, I spent the sweetest morning ever in Annabelle's hospital room, smelling baby smells, listening to coos and cries, and meeting this new life that magically appeared and completely changed our family dynamic forever. I left the hospital, checked my cell phone and saw a message from my doctor. Cancer has an unpleasant habit of injecting itself right into the middle of every major life milestone - engagements, weddings, babies, holidays. Scan results were back and my cancer was growing, quickly. Change would be needed. Could I get to the hospital at 7am on Monday. Flights home were moved up, Annabelle visits were cut short. I didn't tell the glowing new parents about this news though. This needed to be their weekend. Cancer might ruin my day, but it sure as hell wasn't going to ruin their's!
The plan on Monday was to enroll in a clinical trial. Unfortunately, no clinical trial seats were available. Dr. P thought a trial might open up at the end of the month. For now, she was putting me on an FDA approved drug, Navelbene, that I had been on before. It had been several years before and I had stopped taking the Navelbene early. We didn't think my cancer had ever grown on it. The cancer hadn't shrunk on Navelebene, but it had stayed stable and the side effects were minimal. This seemed to be a good "place holder" for a month while a clinical trial seat opened up. I wouldn't use up any previously unused FDA approved drugs, we would keep all new drugs in my "arsenal" should we need them in the future, but I wouldn't leave the cancer untreated.
A month went by and no new trial opened up. That was heartbreak number 1.
Everyday I waited by the phone holding my breath, distracted and stressed out and snippy with the husband, hoping beyond hope that this was the day we would get the call. This was the day a trial seat would open. I can only imagine this must be what organ transplant patients go through. I hate it. I never want to experience that kind of long term anticipation and constant disappointment as each day's sun sets again.
Two months go by, a trial seat opens! This trial, however, is not ideal. It is a phase 1 trial of a type of drug called a "protein kinase inhibitor" I had taken a protein kinase inhibitor in a clinical trial setting before and had a very violent reaction. My platelet count fell dangerously low and I was breaking out into bruises all over my body. Just sitting on the couch watching tv, I would stand up and my whole back would be covered in bruises. It was scary. I didn't want those side effects again, but beggars can't be choosers and not all protein kinase inhibitors are created equal, so I jumped in with a smile and both feet!
Enrolling in a clinical trial is harder than getting into Harvard. The patient must first go through a "drying out period." No other chemo drugs for a month. You have to swallow your fear, put all your eggs in this clinical trial basket, and hope your cancer doesn't grow for the next month chemo-free. You then spend the next month going through test after test after test- bone scans, brain scans, lung tests, blood work, blood work, and more blood work. I was at the hospital for days on end getting different tests. Each test was more stressful than the next.
Finally the big day is here. Somehow we've made it to July, I've barely blinked or had time to wrap my head around this, and I'm still not being treated with any drugs! I am sitting in my gorgeous peach hospital gown, freezing cold in the AC, excited to start my new lifesaving clinical trial. The doctor comes in to review the last round of blood work and perform the last exam before that priceless drug can enter my bloodstream. As she is going through the blood work, we get to the last page of like 6 pages of results. She suddenly stops, "hmmmmmm"s, looks at me, looks back at the computer screen, frowns. Turns out, my liver function has dropped over the past month of no chemo because the cancer in my liver has grown. One little liver output - billirubin - that rarely changes and we rarely look at has gone up drastically. My billirubin has disqualified me from the clinical trial.
I struggle not to cry. I struggle not to scream. I struggle not to strangle Dr. P right there in the exam room.
She quickly calls in reinforcements and starts looking through her email and on the clinical trials website for another option. All options require my billirubin to be lower. I am officially a clinical trial reject. I can't enroll in anything. It is back onto drugs that are designed, not to kill, but to (hopefully) keep things stable.
After all this waiting, all this hoping, all this sitting by the phone.
I can't handle it. I shut down. The disappointment is too much. I am sick and tired of being cancer girl. I am paralyzed. Every time I think about my cancer now, I cry. I break down. I am shedding tears on my keyboard now as we speak. I have reached my limit. My Big Girl Pants can only stretch so far. A girl can only handle so much. I can handle no more.
I don't call my friends. I stop my blog. I don't want to talk about how I'm doing. I'm not doing well.
I throw myself into work - where I am anonymous. Where I am judged, not by my liver output, but instead by things that are within my control. I flourish at work. Work makes me calm. Work makes me normal.
I throw myself into caring for my husband, who is struggling perhaps even more than I. He can't make this better. The drugs do not keep things stable. My tumor markers rise from 200 to 500 to 600 to 6,000 to 8,000. Big Man can only watch as I lose my appetite and get skinnier and skinnier. I struggle to catch my breath when I walk the dog because the lesions in my lungs are getting larger. I wake up in the middle of the night with excruciating pain in my side from my enlarged and painful liver. Every day I feel new swollen glands, in my neck, in my belly, in my groin. The cancer is in control. I can't get on a trial, what can I do? I can bake him birthday cake. I can cook him 5 course dinners. We can watch movies together and go out to long silent dinners together and just spend time clinging to one another.
But this life is not good. A life revolving around work and caring for the home is good, but is not enough. We need friends, we need to come out from the shadows and share. We can't keep this news to ourselves forever.
I am starting to call friends. I am keeping engagements. I am trying.
Last week, even though I was getting over a major chemo-induced bout with Thrush, which is a horrible virus I don't recommend any of you contract if you can help it, I insisted upon keeping a long standing Annabelle visit. It was hard traveling when I wasn't 100%. It was also scary to travel when every single person around me seemed to be coughing and sneezing and touching things nearby. I hate traveling with cancer, but I realize now that I can't keep doing what I'm doing or I'm going to keep getting what I've got. I am sad. I cry a lot. I am missing fun summer things. I have to move forward.
I am so glad I traveled. The latest chemo drug we are trying to get my cancer under control is making me lose my hair again. I only have about 3 months worth of hair growth, but it is hard won and has done a lot to boost my self esteem. My hair is starting to fall out again. Hair is everywhere. Taking showers is depressing. The last of my eyelashes fell out on Sunday.
But when you get a spit-filled, toothless grin from your niece at 7am as she greets you in her crib smelling all baby-ish, when she looks at you, and recognizes you, and knows that "this girl is fun! I know you! It's time to have fun today...." That 4 month old grin wipes away all the pain and sadness and hair loss. When you are showered with 4 month old Annabelle smile, you feel like the most gorgeous girl in the world - hair loss be damned.
I want to have more of those lifetime moments. I want to have more moments of belly laughter around a dinner table with friends. I want to have more late nights of card games with my sister in law. I want more Annabelle smiles. Even if I feel sick, there are things I can do and should do. I was able to make that trip home. I want to plan more of them. Even though I'm crying over the keyboard, I am perfectly capable of sharing with all of you, and I know that you will lift me up, and somehow magically make me feel better as you always do with your support and love.
So here I am, this is my coming out party. Things are going well these days. This has been hard. But I am moving forward, and I am insisting on focusing on and planning more wonderful, happy lifetime moments. I am hopeful that this latest drug regimen - Herceptin, Docetaxol, and Perjeta - is THE drug regimen that stops all of these painful cancer-induced side effects. I am hopeful that I will start to feel like myself again, even if I am my bald self. I am hopeful that I will have many more Annabelle visits and that I can watch her start to sit up on her own and crawl, which she is dying to do!
I am going to start living life again.
Thanks for being patient with me as I struggle with this. I care about all of you very much.
Cancer has taught me several new lessons this summer. Learning has been painful, isolating, discouraging....heartbreaking.
My niece, Annabelle, was born with a full head of beautiful brown hair, brilliant blue eyes, and charmingly fat cheeks on April 5th. I was there to greet her, which was so special! You won't see pictures of baby Annabelle on this blog as she isn't my baby to share with the world, but I must say, she's the most gorgeous baby I've ever seen. I may be biased though.
On April 6th, I spent the sweetest morning ever in Annabelle's hospital room, smelling baby smells, listening to coos and cries, and meeting this new life that magically appeared and completely changed our family dynamic forever. I left the hospital, checked my cell phone and saw a message from my doctor. Cancer has an unpleasant habit of injecting itself right into the middle of every major life milestone - engagements, weddings, babies, holidays. Scan results were back and my cancer was growing, quickly. Change would be needed. Could I get to the hospital at 7am on Monday. Flights home were moved up, Annabelle visits were cut short. I didn't tell the glowing new parents about this news though. This needed to be their weekend. Cancer might ruin my day, but it sure as hell wasn't going to ruin their's!
The plan on Monday was to enroll in a clinical trial. Unfortunately, no clinical trial seats were available. Dr. P thought a trial might open up at the end of the month. For now, she was putting me on an FDA approved drug, Navelbene, that I had been on before. It had been several years before and I had stopped taking the Navelbene early. We didn't think my cancer had ever grown on it. The cancer hadn't shrunk on Navelebene, but it had stayed stable and the side effects were minimal. This seemed to be a good "place holder" for a month while a clinical trial seat opened up. I wouldn't use up any previously unused FDA approved drugs, we would keep all new drugs in my "arsenal" should we need them in the future, but I wouldn't leave the cancer untreated.
A month went by and no new trial opened up. That was heartbreak number 1.
Everyday I waited by the phone holding my breath, distracted and stressed out and snippy with the husband, hoping beyond hope that this was the day we would get the call. This was the day a trial seat would open. I can only imagine this must be what organ transplant patients go through. I hate it. I never want to experience that kind of long term anticipation and constant disappointment as each day's sun sets again.
Two months go by, a trial seat opens! This trial, however, is not ideal. It is a phase 1 trial of a type of drug called a "protein kinase inhibitor" I had taken a protein kinase inhibitor in a clinical trial setting before and had a very violent reaction. My platelet count fell dangerously low and I was breaking out into bruises all over my body. Just sitting on the couch watching tv, I would stand up and my whole back would be covered in bruises. It was scary. I didn't want those side effects again, but beggars can't be choosers and not all protein kinase inhibitors are created equal, so I jumped in with a smile and both feet!
Enrolling in a clinical trial is harder than getting into Harvard. The patient must first go through a "drying out period." No other chemo drugs for a month. You have to swallow your fear, put all your eggs in this clinical trial basket, and hope your cancer doesn't grow for the next month chemo-free. You then spend the next month going through test after test after test- bone scans, brain scans, lung tests, blood work, blood work, and more blood work. I was at the hospital for days on end getting different tests. Each test was more stressful than the next.
Finally the big day is here. Somehow we've made it to July, I've barely blinked or had time to wrap my head around this, and I'm still not being treated with any drugs! I am sitting in my gorgeous peach hospital gown, freezing cold in the AC, excited to start my new lifesaving clinical trial. The doctor comes in to review the last round of blood work and perform the last exam before that priceless drug can enter my bloodstream. As she is going through the blood work, we get to the last page of like 6 pages of results. She suddenly stops, "hmmmmmm"s, looks at me, looks back at the computer screen, frowns. Turns out, my liver function has dropped over the past month of no chemo because the cancer in my liver has grown. One little liver output - billirubin - that rarely changes and we rarely look at has gone up drastically. My billirubin has disqualified me from the clinical trial.
I struggle not to cry. I struggle not to scream. I struggle not to strangle Dr. P right there in the exam room.
She quickly calls in reinforcements and starts looking through her email and on the clinical trials website for another option. All options require my billirubin to be lower. I am officially a clinical trial reject. I can't enroll in anything. It is back onto drugs that are designed, not to kill, but to (hopefully) keep things stable.
After all this waiting, all this hoping, all this sitting by the phone.
I can't handle it. I shut down. The disappointment is too much. I am sick and tired of being cancer girl. I am paralyzed. Every time I think about my cancer now, I cry. I break down. I am shedding tears on my keyboard now as we speak. I have reached my limit. My Big Girl Pants can only stretch so far. A girl can only handle so much. I can handle no more.
I don't call my friends. I stop my blog. I don't want to talk about how I'm doing. I'm not doing well.
I throw myself into work - where I am anonymous. Where I am judged, not by my liver output, but instead by things that are within my control. I flourish at work. Work makes me calm. Work makes me normal.
I throw myself into caring for my husband, who is struggling perhaps even more than I. He can't make this better. The drugs do not keep things stable. My tumor markers rise from 200 to 500 to 600 to 6,000 to 8,000. Big Man can only watch as I lose my appetite and get skinnier and skinnier. I struggle to catch my breath when I walk the dog because the lesions in my lungs are getting larger. I wake up in the middle of the night with excruciating pain in my side from my enlarged and painful liver. Every day I feel new swollen glands, in my neck, in my belly, in my groin. The cancer is in control. I can't get on a trial, what can I do? I can bake him birthday cake. I can cook him 5 course dinners. We can watch movies together and go out to long silent dinners together and just spend time clinging to one another.
But this life is not good. A life revolving around work and caring for the home is good, but is not enough. We need friends, we need to come out from the shadows and share. We can't keep this news to ourselves forever.
I am starting to call friends. I am keeping engagements. I am trying.
Last week, even though I was getting over a major chemo-induced bout with Thrush, which is a horrible virus I don't recommend any of you contract if you can help it, I insisted upon keeping a long standing Annabelle visit. It was hard traveling when I wasn't 100%. It was also scary to travel when every single person around me seemed to be coughing and sneezing and touching things nearby. I hate traveling with cancer, but I realize now that I can't keep doing what I'm doing or I'm going to keep getting what I've got. I am sad. I cry a lot. I am missing fun summer things. I have to move forward.
I am so glad I traveled. The latest chemo drug we are trying to get my cancer under control is making me lose my hair again. I only have about 3 months worth of hair growth, but it is hard won and has done a lot to boost my self esteem. My hair is starting to fall out again. Hair is everywhere. Taking showers is depressing. The last of my eyelashes fell out on Sunday.
But when you get a spit-filled, toothless grin from your niece at 7am as she greets you in her crib smelling all baby-ish, when she looks at you, and recognizes you, and knows that "this girl is fun! I know you! It's time to have fun today...." That 4 month old grin wipes away all the pain and sadness and hair loss. When you are showered with 4 month old Annabelle smile, you feel like the most gorgeous girl in the world - hair loss be damned.
I want to have more of those lifetime moments. I want to have more moments of belly laughter around a dinner table with friends. I want to have more late nights of card games with my sister in law. I want more Annabelle smiles. Even if I feel sick, there are things I can do and should do. I was able to make that trip home. I want to plan more of them. Even though I'm crying over the keyboard, I am perfectly capable of sharing with all of you, and I know that you will lift me up, and somehow magically make me feel better as you always do with your support and love.
So here I am, this is my coming out party. Things are going well these days. This has been hard. But I am moving forward, and I am insisting on focusing on and planning more wonderful, happy lifetime moments. I am hopeful that this latest drug regimen - Herceptin, Docetaxol, and Perjeta - is THE drug regimen that stops all of these painful cancer-induced side effects. I am hopeful that I will start to feel like myself again, even if I am my bald self. I am hopeful that I will have many more Annabelle visits and that I can watch her start to sit up on her own and crawl, which she is dying to do!
I am going to start living life again.
Thanks for being patient with me as I struggle with this. I care about all of you very much.
Friday, October 7, 2011
The Importance of October
October is here again and the newspapers are full of opinion pieces about the commercialization of breast cancer. People are arguing, yet again, that we are "pink washed" and that this Breast Cancer Awareness Month takes away from other cancer research.
This couldn't be further from the truth. I have been on dozens of drugs that are actively used to treat a plethora of solid tumor cancers like lung, prostate, pancreatic, GI, and liver. Dollars raised for cancer research - any kind of cancer research- are a good thing, period.
It just so happens that pink is a pretty color. Pink resonates with a large segment of the population. Marketing and PR skills, so often used for bad in our country, are finally dedicated to a noble cause. Everyone needs to stop talking, stop criticizing, stop complaining, and simply take action. Stop wasting your breath throwing stones at what is meant to be a positive effort, get off your soapbox, and start taking action for that cancer or cause that stirs your soul. People are dying while we debate the value of the color pink. People are dying- remember that.
There isn't enough pink in this world. Every time someone dies from this terrible, painful, scary disease, another pink ribbon needs to be born. That is why I re-branded my blog for October. Do you like?
As if I needed a reminder, as if I needed another fire lit under my bottom, October 2011 commenced in the Spence household with a harsh reminder of the urgent need for a cure.
Last week, my routine weekly bloodwork showed a sharp increase in my tumor markers. The Good Doctor was concerned; she ordered CT scans. On October 3rd, 2011, I found myself in my familiar CT tunnel fighting back tears.
Here we go again.
My cancer is getting more and more aggressive. The Good Doctor delivered terrible news this week. Instead of two small tumors in my liver, I am now facing a much greater hurdle. There are now "several more" spots in my liver, and the old existing spots have tripled in size. From 7mm to 26mm and 32mm respectively. They also now see spots in both my lungs, and evidence of cancer in my bones. I have small spots in both hip bones and in my low back.
I am scared.
I am looking forward to going to church this weekend. I need consolation and some advice that only prayer can provide. I don't know how to enter this new chapter gracefully. My doctor tells me we are no longer in control. The cancer is in control. We are now the underdog. We now have to fight to regain control.
Don't get me wrong: I plan to fight. I have been screaming at the ceiling. I am only 28. I have only just begun. I have so many hopes and wishes and plans. I want more time. I'm not ready. At the same time, I also don't want to be brave anymore. I don't want to put on a smile and get on with everyday life when I have to fight so hard for every precious moment. I just want to curl up with my loved ones and be cared for. I am tired and I want to stop fighting.
But I can't. There's too much at stake to stop fighting. If breast cancer takes me down, then I'm going to go down swinging.
This October, I'm going to lose my hair for the second time. My wig has been brought out of storage and visited the hairdresser for an update. It stands at the ready in my walk-in closet. It's scaring the dog. She barks at it.
I'll be celebrating breast cancer awareness month with an electric razor and a mirror. How will you be spending your breast cancer awareness month?
This couldn't be further from the truth. I have been on dozens of drugs that are actively used to treat a plethora of solid tumor cancers like lung, prostate, pancreatic, GI, and liver. Dollars raised for cancer research - any kind of cancer research- are a good thing, period.
It just so happens that pink is a pretty color. Pink resonates with a large segment of the population. Marketing and PR skills, so often used for bad in our country, are finally dedicated to a noble cause. Everyone needs to stop talking, stop criticizing, stop complaining, and simply take action. Stop wasting your breath throwing stones at what is meant to be a positive effort, get off your soapbox, and start taking action for that cancer or cause that stirs your soul. People are dying while we debate the value of the color pink. People are dying- remember that.
There isn't enough pink in this world. Every time someone dies from this terrible, painful, scary disease, another pink ribbon needs to be born. That is why I re-branded my blog for October. Do you like?
As if I needed a reminder, as if I needed another fire lit under my bottom, October 2011 commenced in the Spence household with a harsh reminder of the urgent need for a cure.
Last week, my routine weekly bloodwork showed a sharp increase in my tumor markers. The Good Doctor was concerned; she ordered CT scans. On October 3rd, 2011, I found myself in my familiar CT tunnel fighting back tears.
Here we go again.
My cancer is getting more and more aggressive. The Good Doctor delivered terrible news this week. Instead of two small tumors in my liver, I am now facing a much greater hurdle. There are now "several more" spots in my liver, and the old existing spots have tripled in size. From 7mm to 26mm and 32mm respectively. They also now see spots in both my lungs, and evidence of cancer in my bones. I have small spots in both hip bones and in my low back.
I am scared.
I am looking forward to going to church this weekend. I need consolation and some advice that only prayer can provide. I don't know how to enter this new chapter gracefully. My doctor tells me we are no longer in control. The cancer is in control. We are now the underdog. We now have to fight to regain control.
Don't get me wrong: I plan to fight. I have been screaming at the ceiling. I am only 28. I have only just begun. I have so many hopes and wishes and plans. I want more time. I'm not ready. At the same time, I also don't want to be brave anymore. I don't want to put on a smile and get on with everyday life when I have to fight so hard for every precious moment. I just want to curl up with my loved ones and be cared for. I am tired and I want to stop fighting.
But I can't. There's too much at stake to stop fighting. If breast cancer takes me down, then I'm going to go down swinging.
This October, I'm going to lose my hair for the second time. My wig has been brought out of storage and visited the hairdresser for an update. It stands at the ready in my walk-in closet. It's scaring the dog. She barks at it.
I'll be celebrating breast cancer awareness month with an electric razor and a mirror. How will you be spending your breast cancer awareness month?
Friday, August 5, 2011
A Huge Blow
I have to ask for your forgiveness, kind readers. I admit, I have been hiding and I have been procrastinating. Both of these qualities are unusual for me. I am usually very forthright, open, and a take the bull by the horns kinda gal, but, please allow me to explain my silence.
A couple of months ago, I celebrated stable scan results and looked forward to a quiet summer. I promised all of you blog readers that I was going to celebrate my summer of stability by focusing on others and ending the Bridget Show.
The reason I have been hiding is because the Bridget Show has come to the forefront again- way sooner than expected.
I desperately want to be normal, quiet, and not the center of attention or the focus of pity, so I didn't want to share my news with you blog readers until I absolutely had to share it. I wanted to put off this post for as long as necessary. I wanted to put off the questions of "How are you doing" and "what can we do to help?" etc, etc for as long as possible. At the same time, I also couldn't in good conscience lie to all of you. I couldn't write about other people's stories, or cover topics like cancer and fertility or cancer and careers, and pretend my world was quiet and perfect, when in fact my whole world was falling apart. So I chose the middle ground. I didn't lie, but I didn't come clean. I chose silence.
Please accept my apology. Today, I'm coming clean.
The cancer has grown. The Tykerb/Xeloda regimen has failed.
It all started with my stable scan results. At the same time that the doctors look at my CT scan, they also take blood work and keep an eye on my "tumor markers." Tumor markers are like trails of trash that my cancer leaves behind in my bloodstream as it grows and travels. When my tumor markers decline, it is a sign that my therapy is working. When they increase, it is a signal that my treatment is failing. That said, tumor markers are unreliable, so we don't jump to 'all hands on deck' after just one bad blood test. Instead, like playing the stock market, we follow the tumor markers' trends and we make decisions based on trends after looking at weeks and weeks of data points.
So, the same day that my CT scan results showed stability, my blood work showed increased tumor markers. Because we focus on tumor marker trends, my doctors played down the blood work and focused instead on the stability seen on the scan. However, after we saw a second large jump in my tumor markers the next visit, the doctors started preparing me for bad news. After a third jump, the doctors said, let's be safe and scan you early.
After the second appointment, when concerns were first raised, I felt a knot in the pit of my stomach. My doctors had never before focused much on tumor markers. My subconscious was telling me that this was not good. I wanted to hide. I wanted so desperately for my life to be normal and wonderful and perfect. I wanted so badly to enjoy the blissful summer I had planned.
I couldn't bring myself to blog. Sharing the news made it real- I was admitting to something I couldn't yet admit to myself. Like I said before, I took the easy approach and I disappeared- from blogs, from Twitter, from Facebook, from email returning, even from some phone calls. I apologize, friends.
Instead of blogging or emailing with all of you, I threw myself into home and work. I cooked for Big Man like he was a family of 4. I made mango salsas and elaborate skewers of meat and fancy veggies. Like Izzy on Grey's Anatomy, I baked- cookies, and brownies, and cakes- oh my! I walked the dog 4 times a day for long walks through new neighborhoods. I stared at her perfect, cute little face. I stayed up late and stared at the Big Man while he was sleeping (creepy! but also romantic) and I imagined what our kids would look like. I didn't want to fall asleep each night. I stayed awake later and later. I didn't want to go to bed because I didn't want the party to end. Every day that passed was one day closer to the bad news that the butterflies in my stomach knew was coming.
I also threw myself into work. For those who don't know, I am a coach as well as a 5 time walker for the Susan G. Komen 3-Day for the Cure. A few months ago, I moved into a new position at the 3-Day- I no longer worked nationally with every event, I now am the chief cook and bottle washer here in Boston. That really is my title "Boston's chief cook and bottle washer!" I threw myself into the new job working weekends and nights, and loving it! The Boston 3-Day for the Cure was July 22-24th, otherwise known as the hottest weekend in 100 years or something. I relished the busy-ness and the heat and the challenge. I wasn't winning in my own cancer battle, but I sure as hell could work my tail off and save someone else. I also relished the fact that, at work, I knew what was expected of me. I could handle work. I could control work. There were SOPs and checklists and deadlines. There is no SOP for metastatic breast cancer. I couldn't control my tumor markers.
I loved hiding.
So this brings us to a couple weeks ago. On Sunday July 24th, I celebrated with the 1,800 walkers and 350 crew as they crossed the finish line of the 2011 Boston 3-Day. I hugged my survivor friends. I cried with them. I laughed with them. I took pleasure in hearing other people's stories instead of sharing mine. I looked fabulous. I felt fabulous. I was a success. Life was good.
The next day, on July 25th, life got tough. At 7am, I lay alone in the tunnel of a CT scanner, praying because my life depended on it.
This unexpected, early scan showed that in just 2 months my cancer had grown in both my liver and my lymphnodes. In my abdominal lymphnodes, the cancer used to be about 1mm. The cancer was now more than 2cm. In my liver, my tumor previously was 1cm. My liver tumor was now 2.6cm. In just two months, my tumor markers went from 40 to 120.
Allow me to explain those that these tumors, my cancer, is all still very small and very manageable. This is not a "get your affairs in order" situation. I don't want everyone to freak out or misread me. I still plan on celebrating my 30th birthday in two years and throwing the most fabulous Birthday Bash the world has ever seen, but there is also no doubt the cancer is growing. We need to take action and stop it.
There are two things that make me angry about this situation. First of all, the trials and tribulations of Tykerb and Xeloda were all for naught. That regimen never really worked for me. I was on them for only 4 months. I suffered with hives, painful and peeling feet and hands, and acne on my face that made young children run and hide. All of that was for nothing. That said, the Tykerb and Xeloda probably did slow down my cancer's growth. The cancer grew, but it took 4 months for us to notice anything. I guess I'll take that, but I'm not happy about it.
Secondly, I feel like we are getting down to the wire. I just keep taking hit, after hit, after hit, and its getting to me mentally. These past 2 years it seems as though nothing has worked! I've had some victories, but I have had more losses than victories. My "arsenal" of drugs has now dwindled to 4. There are 4 more standard therapies available to me if this cancer keeps growing. That does not make me happy. I need 84 years worth of drugs if I am to grow old with Big Man as I have planned. When I counted the remaining number of drugs with my doctor, I gulped and clutched Mommy's hand desperately. In the past I have felt scared, disappointed and worried, but I've never felt desperation before.
I am starting a new chemo called Gemzar. I am going to take it in combination with my BFF, the drug Herceptin. The big bummer is that Gemzar is given through IV over several hours...every week. No more fantastic trips to Paris or Milan for me. I might have to miss a few friends' weddings. Every single week I have to show up like a good little girl and get my drugs. Cancer will be an even more frequent intruder in m life. I will spend even more time at the hospital instead of out living like every other 28 year old. Unfair!
Gemzar causes flulike symptoms. After my first treatment a few days ago, I ran a fever, and had chills and muscle aches. It's pretty daunting to imagine suffering through a flu every single week for the foreseeable future.
My doctor says in most patients the flulike symptoms diminish over time. I won't run a fever or have chills, I'll just be achy. Let's hope that diminishing happens sooner rather than later. After all, I have a full plate. I have to take over the world and cure cancer, remember?
The realities of entering this next, scarier phase in my fight against breast cancer are particularly daunting. All of the most exciting and talked about supposed "cures," all of the hottest and latest drugs, well, I've taken them. They haven't worked. Now I am on to "standard therapy." I am hoping and praying that Gemzar gives me stability, but after 3 failed regimens in one year, I just don't know if I can say that I am kicking cancer's ass. Cancer seems to be kicking mine these days. On the internet I found a synopsis of the results of clinical trials of this Gemzar and Herceptin regimen, the median time to progression for patients (meaning the median amount of time that these drugs gave patients' the stability that I so desperately want) was 5 months. The median survival time for patients receiving this regimen....10 months. I want more than 10 months! I am not ready to die in this calendar year. I have to assume those statistics will not be mine, but they still are staring me in the face. They still haunt me every night as I try to fall asleep.
My doctor is my biggest fan. It makes me choke up just thinking about her. She's wonderful. She tells me she has seen some patients who were on this drug for several years. She's confident of my future and she scoffs when I mention that I am doubting my hope of a 30th birthday. She says the results of this regimen vary greatly by individual. She also reassured me because I'm in great shape and I'm so very young.
With her confidence in my back pocket, I am entering this new chapter with my Big Girl Pants on tight. She's right, I can handle this. She wouldn't give it to me if she didn't think it would help. So, even though I am scared and worried and disappointed, I have to put on my Big Girl Pants and focus on hope. I suppose that is what faith really is, believing in something when it seems impossible. True faith isn't believing in something when the chances of it happening are good. True faith is continuing to believe even if that seems crazy, especially when it seems crazy. I'm choosing to believe. I am going to continue to believe in my future. I will continue to believe that Big Man and I could one day have babies. I will continue to believe that we will grow old together. I will continue to believe in it, and I can't wait for that to happen!
Today though, I ask you for some favors. I ask you for prayers, but not pity, and I ask you for research dollars, passion, and activism, but not gifts or cards. We need to cure this and I can't do it alone. We need to cure this SOON.
Even though I hoped and prayed and hid from reality for the past two months, I now must admit: the Bridget Show continues. I just hope that this past year of my blogging has opened your eyes to the roller coaster that is Life With Breast Cancer. I hope that my blog has made you understand why the world needs more pink. I hope you realize that, contrary to popular opinion, this battle for a cure is far from over.
Every 69 seconds someone in the world dies from breast cancer.
That needs to end....now. I don't want to add my life to that statistic, but I can't help but wonder, when will my 69 seconds come around?
A couple of months ago, I celebrated stable scan results and looked forward to a quiet summer. I promised all of you blog readers that I was going to celebrate my summer of stability by focusing on others and ending the Bridget Show.
The reason I have been hiding is because the Bridget Show has come to the forefront again- way sooner than expected.
I desperately want to be normal, quiet, and not the center of attention or the focus of pity, so I didn't want to share my news with you blog readers until I absolutely had to share it. I wanted to put off this post for as long as necessary. I wanted to put off the questions of "How are you doing" and "what can we do to help?" etc, etc for as long as possible. At the same time, I also couldn't in good conscience lie to all of you. I couldn't write about other people's stories, or cover topics like cancer and fertility or cancer and careers, and pretend my world was quiet and perfect, when in fact my whole world was falling apart. So I chose the middle ground. I didn't lie, but I didn't come clean. I chose silence.
Please accept my apology. Today, I'm coming clean.
The cancer has grown. The Tykerb/Xeloda regimen has failed.
It all started with my stable scan results. At the same time that the doctors look at my CT scan, they also take blood work and keep an eye on my "tumor markers." Tumor markers are like trails of trash that my cancer leaves behind in my bloodstream as it grows and travels. When my tumor markers decline, it is a sign that my therapy is working. When they increase, it is a signal that my treatment is failing. That said, tumor markers are unreliable, so we don't jump to 'all hands on deck' after just one bad blood test. Instead, like playing the stock market, we follow the tumor markers' trends and we make decisions based on trends after looking at weeks and weeks of data points.
So, the same day that my CT scan results showed stability, my blood work showed increased tumor markers. Because we focus on tumor marker trends, my doctors played down the blood work and focused instead on the stability seen on the scan. However, after we saw a second large jump in my tumor markers the next visit, the doctors started preparing me for bad news. After a third jump, the doctors said, let's be safe and scan you early.
After the second appointment, when concerns were first raised, I felt a knot in the pit of my stomach. My doctors had never before focused much on tumor markers. My subconscious was telling me that this was not good. I wanted to hide. I wanted so desperately for my life to be normal and wonderful and perfect. I wanted so badly to enjoy the blissful summer I had planned.
I couldn't bring myself to blog. Sharing the news made it real- I was admitting to something I couldn't yet admit to myself. Like I said before, I took the easy approach and I disappeared- from blogs, from Twitter, from Facebook, from email returning, even from some phone calls. I apologize, friends.
Instead of blogging or emailing with all of you, I threw myself into home and work. I cooked for Big Man like he was a family of 4. I made mango salsas and elaborate skewers of meat and fancy veggies. Like Izzy on Grey's Anatomy, I baked- cookies, and brownies, and cakes- oh my! I walked the dog 4 times a day for long walks through new neighborhoods. I stared at her perfect, cute little face. I stayed up late and stared at the Big Man while he was sleeping (creepy! but also romantic) and I imagined what our kids would look like. I didn't want to fall asleep each night. I stayed awake later and later. I didn't want to go to bed because I didn't want the party to end. Every day that passed was one day closer to the bad news that the butterflies in my stomach knew was coming.
I also threw myself into work. For those who don't know, I am a coach as well as a 5 time walker for the Susan G. Komen 3-Day for the Cure. A few months ago, I moved into a new position at the 3-Day- I no longer worked nationally with every event, I now am the chief cook and bottle washer here in Boston. That really is my title "Boston's chief cook and bottle washer!" I threw myself into the new job working weekends and nights, and loving it! The Boston 3-Day for the Cure was July 22-24th, otherwise known as the hottest weekend in 100 years or something. I relished the busy-ness and the heat and the challenge. I wasn't winning in my own cancer battle, but I sure as hell could work my tail off and save someone else. I also relished the fact that, at work, I knew what was expected of me. I could handle work. I could control work. There were SOPs and checklists and deadlines. There is no SOP for metastatic breast cancer. I couldn't control my tumor markers.
I loved hiding.
 |
| Me as 3-Day coach with my blogger buddy Dusty Showers- Big Man, be afraid, be very afraid! |
The next day, on July 25th, life got tough. At 7am, I lay alone in the tunnel of a CT scanner, praying because my life depended on it.
This unexpected, early scan showed that in just 2 months my cancer had grown in both my liver and my lymphnodes. In my abdominal lymphnodes, the cancer used to be about 1mm. The cancer was now more than 2cm. In my liver, my tumor previously was 1cm. My liver tumor was now 2.6cm. In just two months, my tumor markers went from 40 to 120.
Allow me to explain those that these tumors, my cancer, is all still very small and very manageable. This is not a "get your affairs in order" situation. I don't want everyone to freak out or misread me. I still plan on celebrating my 30th birthday in two years and throwing the most fabulous Birthday Bash the world has ever seen, but there is also no doubt the cancer is growing. We need to take action and stop it.
There are two things that make me angry about this situation. First of all, the trials and tribulations of Tykerb and Xeloda were all for naught. That regimen never really worked for me. I was on them for only 4 months. I suffered with hives, painful and peeling feet and hands, and acne on my face that made young children run and hide. All of that was for nothing. That said, the Tykerb and Xeloda probably did slow down my cancer's growth. The cancer grew, but it took 4 months for us to notice anything. I guess I'll take that, but I'm not happy about it.
Secondly, I feel like we are getting down to the wire. I just keep taking hit, after hit, after hit, and its getting to me mentally. These past 2 years it seems as though nothing has worked! I've had some victories, but I have had more losses than victories. My "arsenal" of drugs has now dwindled to 4. There are 4 more standard therapies available to me if this cancer keeps growing. That does not make me happy. I need 84 years worth of drugs if I am to grow old with Big Man as I have planned. When I counted the remaining number of drugs with my doctor, I gulped and clutched Mommy's hand desperately. In the past I have felt scared, disappointed and worried, but I've never felt desperation before.
I am starting a new chemo called Gemzar. I am going to take it in combination with my BFF, the drug Herceptin. The big bummer is that Gemzar is given through IV over several hours...every week. No more fantastic trips to Paris or Milan for me. I might have to miss a few friends' weddings. Every single week I have to show up like a good little girl and get my drugs. Cancer will be an even more frequent intruder in m life. I will spend even more time at the hospital instead of out living like every other 28 year old. Unfair!
Gemzar causes flulike symptoms. After my first treatment a few days ago, I ran a fever, and had chills and muscle aches. It's pretty daunting to imagine suffering through a flu every single week for the foreseeable future.
My doctor says in most patients the flulike symptoms diminish over time. I won't run a fever or have chills, I'll just be achy. Let's hope that diminishing happens sooner rather than later. After all, I have a full plate. I have to take over the world and cure cancer, remember?
The realities of entering this next, scarier phase in my fight against breast cancer are particularly daunting. All of the most exciting and talked about supposed "cures," all of the hottest and latest drugs, well, I've taken them. They haven't worked. Now I am on to "standard therapy." I am hoping and praying that Gemzar gives me stability, but after 3 failed regimens in one year, I just don't know if I can say that I am kicking cancer's ass. Cancer seems to be kicking mine these days. On the internet I found a synopsis of the results of clinical trials of this Gemzar and Herceptin regimen, the median time to progression for patients (meaning the median amount of time that these drugs gave patients' the stability that I so desperately want) was 5 months. The median survival time for patients receiving this regimen....10 months. I want more than 10 months! I am not ready to die in this calendar year. I have to assume those statistics will not be mine, but they still are staring me in the face. They still haunt me every night as I try to fall asleep.
My doctor is my biggest fan. It makes me choke up just thinking about her. She's wonderful. She tells me she has seen some patients who were on this drug for several years. She's confident of my future and she scoffs when I mention that I am doubting my hope of a 30th birthday. She says the results of this regimen vary greatly by individual. She also reassured me because I'm in great shape and I'm so very young.
 |
| My favorite poster from this year's Boston 3-Day This is going to become my mantra! |
Today though, I ask you for some favors. I ask you for prayers, but not pity, and I ask you for research dollars, passion, and activism, but not gifts or cards. We need to cure this and I can't do it alone. We need to cure this SOON.
Even though I hoped and prayed and hid from reality for the past two months, I now must admit: the Bridget Show continues. I just hope that this past year of my blogging has opened your eyes to the roller coaster that is Life With Breast Cancer. I hope that my blog has made you understand why the world needs more pink. I hope you realize that, contrary to popular opinion, this battle for a cure is far from over.
Every 69 seconds someone in the world dies from breast cancer.
That needs to end....now. I don't want to add my life to that statistic, but I can't help but wonder, when will my 69 seconds come around?
Sunday, January 9, 2011
Scan Results
I knew something was wrong when my doctor came in and noticed my haircut. She was thrilled with the cut, but seemed uncomfortable gushing. She wanted to set a tone for the meeting and my smiling face and desire to be young, happy, and looking forward to a new year was something she was about to crush.
"We have good news and bad news."
My stomach sank, not to my toes, but all the way down the nine floors into the hospital lobby. Mamma grabbed my hand and clutched so hard it hurt, but I didn't dare pull away.
My latest scans showed that the tumors in my liver were stable. Not shrinking, but we were given the gift of stable. That was the good news.
The bad news was two-fold. The scans picked up on a new tumor: a dark spot in a lymph node in my abdomen, behind my liver, next to the celiac artery. Also, my tumor markers had increased markedly. Tumor markers, for my readers in the non-cancer world, are substances that cancer cells produce that can be measured in a blood test. When there is an increase in these substances in my blood, it is an indication of increased cancer cells in my body.
This new tumor and my tumor marker levels meant that I had stopped responding to the TDM1. I was removed from the clinical trial. I can no longer receive my precious silver bullet. Somewhere in the distance as I stared blankly out the 9th floor window, I heard a heavy door slamming shut. I could see my "case" being added to the clinical trial outcomes. My seven months before "disease progression," dragging down the drug's success. My performance dragging down every other patients' average.
I pictured somewhere, perhaps in another room in this very hospital, another metastatic patient was hugging her husband with joy, not fear, as she learned that there is a newly open spot on the TDM1 clinical trial. I probably know this patient. A dark part of me was struggling with my burning jealousy.
My doctor paused to let this news sink in before weighing in with her opinion.
"Bridget, we are disappointed. We are very disappointed. I know everyone in this room hoped that you would be on TDM1 longer, but you have to realize that, from a clinical perspective, this trial was a success. You are in a better place vis a vis your liver now than you were in May. Your liver lesions shrunk 22%. This is a success, and tumors in your lymph nodes, while hearing that is certainly scary, those are not vital organs. Better the lymph node than the liver or another vital organ. We are disappointed, but I am not worried about you. OK?"
I know my doctor is right. I find comfort in her words, and I relish her confidence. My doctor has confidence in me and in my chances.
But I also struggle with other facts. With every drug that is taken away, with every drug removed from my "arsenal," I get closer to running out. I am scared. I am angry at myself for not doing better. Was it something I ate? Too much red meat? Too much red wine? Too much stress? Late nights? Not enough exercise?
Over the past few days, as I have digested this news, I have felt like a spurned lover. I am recovering from a horrible break up. I thought TDM1 was "The One." I had visions of babies and suburban homes and years of happiness. When I was sent home on Wednesday without my scheduled infusion, I cried. I felt hit in the gut. I felt like a woman feels when she stares desperately at the phone and begs it to ring. When she picks up to make sure there's a dial tone. When she calls and hangs up without leaving a message and then yells at herself. Why can't I have him? I miss him! He was perfect! It all seemed to be going so well! What happened?
Just like with a bad breakup I have to learn, "It's not you, it's me." There was nothing I could have done to prevent this. My cancer simply figured out TDM1's weakness too quickly. It found a detour to continue along its path of destruction. My cancer has some sort of as-yet undiscovered personality trait that makes TDM1 less than ideal.
And, just like my single girlfriends everywhere, I have to take a deep breath and say, "On to the next!"
Although I've been on 11 different drugs since 2005, and that might not seem "early" in the cancer journey, my doctor assures me I was actually able to grab a spot on this TDM1 clinical trial a little "earlier" than the other patients. Unlike many members of the trial who had exhausted all other standard therapies, I still have, according to Doc, many standard therapies still available to try. So now, we will try a standard therapy first approved by the FDA in 2007, the targeted therapy Tykerb with the chemotherapy Xeloda.
In 2007, a clinical trial found that Tykerb plus Xeloda given to HER2+ metastatic patients who had progressed on other treatment regimens, gave patients 27 weeks without disease progression versus 18 weeks for Xeloda alone. While 8 months without another progression is certainly not a cure, some patients on Xeloda and Tykerb did see their cancers disappear and have been on the drug for several years. The 8 months is an average. We are entering an age of individualized treatment for breast cancer, my treatment over the last six years has certainly been individualized, and I am hoping to be one of those 'no evidence of disease' recipients of this drug cocktail. I am hoping that this combo will be "The One" for me.
My new drug regimen is all pills. I no longer have to visit the infusion room, which is fantastic, but also feels a little funny. I've gone to infusion every three weeks for the past six years. I feel like my nurses should have some sort of going away party. I know every receptionist, nurse, and clinical assistant. I know their kids' names. I know their upcoming wedding dates. Infusion was a social occasion for me, and those nurses answered a lot of my questions and laid to rest a lot of my concerns. They brought me warm blankets and sandwiches and drinks. They took care of me. They were caregivers. Missing infusion also feels a little like a break up. I know that this could be a great thing; it will just take some getting used to.
Instead of monthly infusions, I will be taking 11 pills every day. Talk about picking your poison! I've already started taking the Tykerb and I'm feeling....funny. I have problems with nausea and I just don't feel quite right, but I figure I can handle funny. We shall see what the Xeloda brings.
How am I doing? I am still digesting this news. I am torn. I have dual personalities here. I feel yet again like I am trying desperately to hold onto my life, grasping at straws, and I am concerned about the continued bad news we've been receiving over the past two years, but cancer can wreak havoc on my body, but it cannot take my soul.
If I've learned nothing in this cancer journey, I've learned that every cancer has a personality. My cancer has multiple personalities: when it dies, it dies quickly, but when it grows, it grows just as fast. This beast struck fear in my heart this week. In just nine weeks the news turned from "shrinking, shrinking, shrinking!" to growing. For cancer to turn on a dime, for a whole new tumor to appear in nine weeks....
This beast doesn't just die and stay dead. It has got a hold on my body and it will not go quietly into that dark night.
Regardless of cancer's intentions, I am adamant that I will continue to live the life I have made for myself. I will witness my best friend walking down the aisle. I will visit the beach with Mamma and Company this summer. I will write a book. Big Man and I are season ticket holders to our local theater and I am seeing every single show and having a pre-theater dinner to boot, even if I do feel a little 'funny.' Big Man and I want to take a trip to Wimbledon some summer soon, he's a tennis player whose never been to London, one of my favorite cities in the world that I can't wait to share with the man I love.
Let me be clear, though. We do not have a bucket list! I don't like the phrase bucket list. I might be aware and prepared for death, but I am certainly not racing toward the finish line while checking things off. Instead, I see the plans I've made as physical evidence of my fight. The battlefield is at the tissue level down in my belly, but I find symbolism from my actions every day.
As I'm swallowing the last five pills of my day, I smile with the realization that this is a physical act. "Take That!" I smile picturing the cancer cells running for the hills as the pill slowly dissolves. Like roaches scattering when you turn on a light. In the same way, if I were to get on a plane for London tomorrow, I would look out the window and say, "Not today, Cancer. Today, I am living!" After getting home from a fantastic party or double date, I think to myself as I kiss Big Man goodnight, "I am alive today."
I feel like, when the end comes, I'll know it. I have seen my grandmothers grow old. Dying from cancer is not like falling over from a heart attack or getting hit by a bus. It is a slow progression like the progression of old age. You slow down. Your plans get a little smaller and closer to home.
Hiking in the White Mountains this summer, crossing the finish line of the 3-Day this fall, planning babies and houses with Big Man at Christmas, yoga classes, dramatic hair cuts, I have very broad and ever broadening horizons. I have big plans.
This cancer might scare me, but I am going to stand my ground.
The Big Man and I went to church together today and left at peace with this news. At peace, but still clinging to one another. We can't seem to hold each other close enough, even while in church. Brushing elbows turns into me slipping my arm through his elbow and Big Man pulling me close. Brushing fingers turns into hand holding. One hand turns to both hands intertwined.
I laid my head on Big Man's shoulder today as Father John talked about the Feast of the Baptism of Our Lord. Father John argued that, while the babies who are welcomed into our church every weekend will certainly not remember their baptism, baptism is the most important sacrament. Symbolically, it is during baptism when God enters our world and makes His mark on our souls. We are His adopted children. He does not give us our eye or hair color, but He has given us all of our best qualities.
My strength and fortitude, my gift of gab. Big Man's ability to make me laugh when I feel instead like crying, Big Man's kind eyes and even kinder heart. Those are the gifts we symbolically received at our baptisms. Those very qualities that get us through cancer and help us to actually grow with it. We don't remember baptism, but our souls remember.
God didn't give me cancer, but He gave me the tools I need to beat it and to carry on.
So, here we go, carrying on!
"We have good news and bad news."
My stomach sank, not to my toes, but all the way down the nine floors into the hospital lobby. Mamma grabbed my hand and clutched so hard it hurt, but I didn't dare pull away.
My latest scans showed that the tumors in my liver were stable. Not shrinking, but we were given the gift of stable. That was the good news.
The bad news was two-fold. The scans picked up on a new tumor: a dark spot in a lymph node in my abdomen, behind my liver, next to the celiac artery. Also, my tumor markers had increased markedly. Tumor markers, for my readers in the non-cancer world, are substances that cancer cells produce that can be measured in a blood test. When there is an increase in these substances in my blood, it is an indication of increased cancer cells in my body.
This new tumor and my tumor marker levels meant that I had stopped responding to the TDM1. I was removed from the clinical trial. I can no longer receive my precious silver bullet. Somewhere in the distance as I stared blankly out the 9th floor window, I heard a heavy door slamming shut. I could see my "case" being added to the clinical trial outcomes. My seven months before "disease progression," dragging down the drug's success. My performance dragging down every other patients' average.
I pictured somewhere, perhaps in another room in this very hospital, another metastatic patient was hugging her husband with joy, not fear, as she learned that there is a newly open spot on the TDM1 clinical trial. I probably know this patient. A dark part of me was struggling with my burning jealousy.
My doctor paused to let this news sink in before weighing in with her opinion.
"Bridget, we are disappointed. We are very disappointed. I know everyone in this room hoped that you would be on TDM1 longer, but you have to realize that, from a clinical perspective, this trial was a success. You are in a better place vis a vis your liver now than you were in May. Your liver lesions shrunk 22%. This is a success, and tumors in your lymph nodes, while hearing that is certainly scary, those are not vital organs. Better the lymph node than the liver or another vital organ. We are disappointed, but I am not worried about you. OK?"
I know my doctor is right. I find comfort in her words, and I relish her confidence. My doctor has confidence in me and in my chances.
But I also struggle with other facts. With every drug that is taken away, with every drug removed from my "arsenal," I get closer to running out. I am scared. I am angry at myself for not doing better. Was it something I ate? Too much red meat? Too much red wine? Too much stress? Late nights? Not enough exercise?
Over the past few days, as I have digested this news, I have felt like a spurned lover. I am recovering from a horrible break up. I thought TDM1 was "The One." I had visions of babies and suburban homes and years of happiness. When I was sent home on Wednesday without my scheduled infusion, I cried. I felt hit in the gut. I felt like a woman feels when she stares desperately at the phone and begs it to ring. When she picks up to make sure there's a dial tone. When she calls and hangs up without leaving a message and then yells at herself. Why can't I have him? I miss him! He was perfect! It all seemed to be going so well! What happened?
Just like with a bad breakup I have to learn, "It's not you, it's me." There was nothing I could have done to prevent this. My cancer simply figured out TDM1's weakness too quickly. It found a detour to continue along its path of destruction. My cancer has some sort of as-yet undiscovered personality trait that makes TDM1 less than ideal.
And, just like my single girlfriends everywhere, I have to take a deep breath and say, "On to the next!"
Although I've been on 11 different drugs since 2005, and that might not seem "early" in the cancer journey, my doctor assures me I was actually able to grab a spot on this TDM1 clinical trial a little "earlier" than the other patients. Unlike many members of the trial who had exhausted all other standard therapies, I still have, according to Doc, many standard therapies still available to try. So now, we will try a standard therapy first approved by the FDA in 2007, the targeted therapy Tykerb with the chemotherapy Xeloda.
In 2007, a clinical trial found that Tykerb plus Xeloda given to HER2+ metastatic patients who had progressed on other treatment regimens, gave patients 27 weeks without disease progression versus 18 weeks for Xeloda alone. While 8 months without another progression is certainly not a cure, some patients on Xeloda and Tykerb did see their cancers disappear and have been on the drug for several years. The 8 months is an average. We are entering an age of individualized treatment for breast cancer, my treatment over the last six years has certainly been individualized, and I am hoping to be one of those 'no evidence of disease' recipients of this drug cocktail. I am hoping that this combo will be "The One" for me.
My new drug regimen is all pills. I no longer have to visit the infusion room, which is fantastic, but also feels a little funny. I've gone to infusion every three weeks for the past six years. I feel like my nurses should have some sort of going away party. I know every receptionist, nurse, and clinical assistant. I know their kids' names. I know their upcoming wedding dates. Infusion was a social occasion for me, and those nurses answered a lot of my questions and laid to rest a lot of my concerns. They brought me warm blankets and sandwiches and drinks. They took care of me. They were caregivers. Missing infusion also feels a little like a break up. I know that this could be a great thing; it will just take some getting used to.
Instead of monthly infusions, I will be taking 11 pills every day. Talk about picking your poison! I've already started taking the Tykerb and I'm feeling....funny. I have problems with nausea and I just don't feel quite right, but I figure I can handle funny. We shall see what the Xeloda brings.
How am I doing? I am still digesting this news. I am torn. I have dual personalities here. I feel yet again like I am trying desperately to hold onto my life, grasping at straws, and I am concerned about the continued bad news we've been receiving over the past two years, but cancer can wreak havoc on my body, but it cannot take my soul.
If I've learned nothing in this cancer journey, I've learned that every cancer has a personality. My cancer has multiple personalities: when it dies, it dies quickly, but when it grows, it grows just as fast. This beast struck fear in my heart this week. In just nine weeks the news turned from "shrinking, shrinking, shrinking!" to growing. For cancer to turn on a dime, for a whole new tumor to appear in nine weeks....
This beast doesn't just die and stay dead. It has got a hold on my body and it will not go quietly into that dark night.
 |
| We have more dancing in the kitchen to do! |
Let me be clear, though. We do not have a bucket list! I don't like the phrase bucket list. I might be aware and prepared for death, but I am certainly not racing toward the finish line while checking things off. Instead, I see the plans I've made as physical evidence of my fight. The battlefield is at the tissue level down in my belly, but I find symbolism from my actions every day.
As I'm swallowing the last five pills of my day, I smile with the realization that this is a physical act. "Take That!" I smile picturing the cancer cells running for the hills as the pill slowly dissolves. Like roaches scattering when you turn on a light. In the same way, if I were to get on a plane for London tomorrow, I would look out the window and say, "Not today, Cancer. Today, I am living!" After getting home from a fantastic party or double date, I think to myself as I kiss Big Man goodnight, "I am alive today."
I feel like, when the end comes, I'll know it. I have seen my grandmothers grow old. Dying from cancer is not like falling over from a heart attack or getting hit by a bus. It is a slow progression like the progression of old age. You slow down. Your plans get a little smaller and closer to home.
Hiking in the White Mountains this summer, crossing the finish line of the 3-Day this fall, planning babies and houses with Big Man at Christmas, yoga classes, dramatic hair cuts, I have very broad and ever broadening horizons. I have big plans.
This cancer might scare me, but I am going to stand my ground.
The Big Man and I went to church together today and left at peace with this news. At peace, but still clinging to one another. We can't seem to hold each other close enough, even while in church. Brushing elbows turns into me slipping my arm through his elbow and Big Man pulling me close. Brushing fingers turns into hand holding. One hand turns to both hands intertwined.
I laid my head on Big Man's shoulder today as Father John talked about the Feast of the Baptism of Our Lord. Father John argued that, while the babies who are welcomed into our church every weekend will certainly not remember their baptism, baptism is the most important sacrament. Symbolically, it is during baptism when God enters our world and makes His mark on our souls. We are His adopted children. He does not give us our eye or hair color, but He has given us all of our best qualities.
 |
| God gave me the Big Man |
God didn't give me cancer, but He gave me the tools I need to beat it and to carry on.
So, here we go, carrying on!
Tuesday, December 7, 2010
The Dreaded D-Word
For those of you not receiving Google alerts for all news cancer, as I am, you may or may not have heard that Elizabeth Edwards has stopped treatment for her metastatic breast cancer and is preparing to die. Mrs. Edwards is a beacon of hope in the metastatic breast cancer world, so this news will certainly come as a huge blow to my metastatic friends. Losing Mrs. Edwards brings to light the one thing which we would all love to forget: we're dying here. We are living fully, but we're living while dying. This breast cancer can kill us.
I think it is safe to say that once you receive the diagnosis of metastatic, once you review the statistics, once you realize the cancer is in a vital organ, you have imagined the conversation with your doctor that Elizabeth Edwards had this week: "We do have more drugs to give you, but they won't help you. Too much has happened. This is the end of your story. Let's get you comfortable."
Right now, in my own metastatic breast cancer journey, my treatment is working and my doctors' outlook is positive, but losing Mrs. Edwards brings to the forefront that fear that I like to forget on the good days.
With this news, I figure this is as good a time as any to broach that huge topic that we've not yet discussed here on this blog. Let's talk about Death.
I am not afraid to die. Not at all. Not even a little bit. I can confidently say, I am ready. Whenever that day comes, whether it's today or 40 years down the road, I will not be scared.
I will not be scared for myself anyway. I am worried about my Big Man and my Mommy and my family and friends. I am scared and sad for them because I lost my father. My dad died two years ago, very suddenly, of a heart attack on his way home from work. My father died on Father's Day. He was 59.
I know all too well the huge hole that is ripped into the very fabric of your being when you lose someone. I know all too well the pain that will never get better. Losing a wife, losing a husband, losing a parent, a sibling, losing a child, that pain never goes away. Every day you think about it, but every day you learn to live with it. You don't move on, you just continue moving. Life goes on, you must go on, but you must go on with this huge sadness. You learn to live, but you are never, ever the same. I am so incredibly sad that my Big Man might have to carry that burden one day. I want to carry that instead. I want him to go first. I love him so much, I don't want him to experience a single moment of pain in his entire life. I want to take his pain away.
I feel so deeply for Elizabeth Edwards' young, beautiful children. My heart is breaking for them. I hope she is holding them close today.
But I also don't want Mrs. Edwards' death to just be something sad that we read about. This moment needs to be more than that. I believe we need to change the way we talk about death and dying. Anyone with a diagnosis as serious as cancer should have a holistic approach to her care and should consider and have plans in place for end of life care. Just as someone has a team of doctors prepared to help them fight the disease, I also have plans in place to help me die with dignity and hope. I have met with my parish priest. I wish this same preparation for every cancer survivor. I firmly believe that knowledge is power. The earlier you talk to me about death, the longer I have to get ready for it. I believe that an introduction to hospice care and regular discussions about 'what if' scenarios are vital for any patient facing a life threatening illness, no matter your prognosis.
If done correctly, slowly, and in an open way, we can take away the fear and the dark cloud that surrounds hospice, death, and dying. Patients will be better prepared to make important end of life decisions. Your judgment might be clouded in the midst of this devastating news. Isn't it better to have ample time to consider these things? Some patients say, "I want to be kept alive as long as possible. Do everything you can." in the heat of the moment and in disbelief of the news, but if given time and space to consider this decision, they might come to a different conclusion.
I also think that having these last moments together will help my loved ones after I am gone to remember those final weeks and months fondly. There should be laughter in there. There will be tears too, but I also want laughter and good memories. I want final wonderful conversations. I don't want my final moments to be all about me in bed exhausted. I want the Big Man, Mommy, Brothers, and my Girls to remember this time with just some tinge of fondness and peace.
I want to be clear here, I don't want to die. I want to grow old with the Big Man, and I plan to! Growing old with my hubby is my deepest desire. I feel that desire deep down in my bones and in the deepest part of my heart, but I also think that how you leave this world is just as important as how you came into it. For some reason though, no one wants to talk about death. I think if we started a conversation about it, it wouldn't be nearly as scary as you all expect. I want my death to be somewhat beautiful. Even if cancer rages through my body and leaves me a shell of my normal self, my soul will still be there. My character will shine through. The way I look into your eyes, the way I hold your hand, and the way I choose to die. All of this will tell you that my soul lives on, even after I take my last breath. My soul will be here.
Expectant mothers spend months planning for the big day- c-section vs. natural childbirth, even 'water birth', midwife vs. obstetrician, blue, pink, purple or green nursery, crib or basinette, boy vs. girl, jack vs. john, abigail vs. sophia? Women also spend every moment starting in pre-school planning our wedding day. Beach vs. church, band vs. dj, the dress! Men, you do it too. You plan becoming professional athletes or firefighters. We plan so much of our lives. I don't understand why we don't also plan our last days together, what could be more important?
Whenever it happens, be it tomorrow, when I'm 31, 81 or 101, I want my funeral to be a great send off. If I spent months planning my wedding, why wouldn't I do the same for my funeral? My wedding day was the best day of my life full of euphoric joy and the overwhelming feeling that, for just that one moment, all was right in the world. My personality and the Big Man's personality shone through on that day. We had very personal touches throughout. Why settle for a sub-par funeral? I want fabulousness. I want my funeral to reflect my personality. I want it to be comforting to my friends and family. I want to send a little message of comfort. I want people to realize that I'm still here. Even after I'm gone, I'll still be there. This is my Great Goodbye. How can you not take some time to plan that? It is so incredibly important.
And so, I've spent a lot of time in thought about how I want to live my life, but also how I want to leave it. I have read the Bible to find appropriate readings that offer hope and comfort and my perspective on the life I've led. I've found hymns that I love that bring me comfort and that make me cry.
But even more than the process of dying, I'm also not afraid of death itself. I am not afraid of the unknown. I have a deep belief in God and I deeply believe that my father is still with me, on some level that I can not comprehend. How can I have this deep faith and belief? Especially since my life has been so very difficult, I of all people have every reason not to believe. I have every reason to get angry with God and turn from all of that "hocus pocus." I have this deep faith for three reasons: I have experienced moments when I know deeply that my father is still with me, I have been humbled by my own power through this journey, and I have found that certain people enter my life at exactly the right moment and I believe those people are my little angels. My fight has also, as I mentioned on Thanksgiving, humbled me to the sheer hugeness and beauty of this world. How can one not believe in God when you see a baby being born?
I believe that people are scared of death because we don't know what happens afterward. I was scared to death at the beginning of this journey about the fear of recurrence. But then one day my cancer returned, and you know what? I handled it. I dealt. The scariest thing happened and it wasn't so scary after all. It was devestating, but with the right little angels by my side, I got through. I deeply believe that death will be the same way. It is something beyond my comprehension, which is why it is scary. If you can not imagine something or understand something it is immediately scary. But if I can handle this crazy life I've been given, I can certainly handle death with beauty and grace.
And so, Mrs. Edwards, I feel deeply for you today. I hope that your family has the time they need and deserve with you. I hope you have those important conversations with your little ones. I am glad you are at home, but I am so sorry that your family has to face this. I hope your faith brings you peace and hope in the midst of this sorrow. I hope for you what I hope for myself, I hope you find peace and love in these coming weeks, and not suffering. I know you will face this with the same dignity and grace that you have faced all of your life's trials. You have, throughout your life facing unimaginable tragedy, always been a lady. You will always be a model for me.
I think it is safe to say that once you receive the diagnosis of metastatic, once you review the statistics, once you realize the cancer is in a vital organ, you have imagined the conversation with your doctor that Elizabeth Edwards had this week: "We do have more drugs to give you, but they won't help you. Too much has happened. This is the end of your story. Let's get you comfortable."
Right now, in my own metastatic breast cancer journey, my treatment is working and my doctors' outlook is positive, but losing Mrs. Edwards brings to the forefront that fear that I like to forget on the good days.
With this news, I figure this is as good a time as any to broach that huge topic that we've not yet discussed here on this blog. Let's talk about Death.
I am not afraid to die. Not at all. Not even a little bit. I can confidently say, I am ready. Whenever that day comes, whether it's today or 40 years down the road, I will not be scared.
I will not be scared for myself anyway. I am worried about my Big Man and my Mommy and my family and friends. I am scared and sad for them because I lost my father. My dad died two years ago, very suddenly, of a heart attack on his way home from work. My father died on Father's Day. He was 59.
 |
| My Dad with all four kids. At the beach, celebrating my second birthday. I'm the half naked child with the amazing bowl cut August 1985, Ocean City, Maryland |
I feel so deeply for Elizabeth Edwards' young, beautiful children. My heart is breaking for them. I hope she is holding them close today.
But I also don't want Mrs. Edwards' death to just be something sad that we read about. This moment needs to be more than that. I believe we need to change the way we talk about death and dying. Anyone with a diagnosis as serious as cancer should have a holistic approach to her care and should consider and have plans in place for end of life care. Just as someone has a team of doctors prepared to help them fight the disease, I also have plans in place to help me die with dignity and hope. I have met with my parish priest. I wish this same preparation for every cancer survivor. I firmly believe that knowledge is power. The earlier you talk to me about death, the longer I have to get ready for it. I believe that an introduction to hospice care and regular discussions about 'what if' scenarios are vital for any patient facing a life threatening illness, no matter your prognosis.
If done correctly, slowly, and in an open way, we can take away the fear and the dark cloud that surrounds hospice, death, and dying. Patients will be better prepared to make important end of life decisions. Your judgment might be clouded in the midst of this devastating news. Isn't it better to have ample time to consider these things? Some patients say, "I want to be kept alive as long as possible. Do everything you can." in the heat of the moment and in disbelief of the news, but if given time and space to consider this decision, they might come to a different conclusion.
I was saddened as I read the news stories about Elizabeth Edwards. A source says she has a matter of weeks, not months. I am a firm believer in, the earlier the better. I would like to be given months of notice. Give me as much time as possible with my family to prepare for this. I don't want my death to be all about me in a hospital bed. I want to have a few final walks hand-in-hand with the Big Man to a coffee shop. I want to sit in the sun on a beach. I want to ride rollercoasters and bumper cars. I want to play epic board games with all of my brothers and my sister-in-laws late into the night. I want wine and cheese and hugs and kisses with my best friends. I want to watch a sunrise. I want to have a last amazing dinner out- a real last meal. Not a last meal in a hospital bed, but a real last meal at a fancy restaurant in a beautiful dress that takes hours and is multiple courses long. I want to have dessert. I want to have everything on the menu that looks good! I want to order that really expensive bottle of wine.
 |
| My Dad in his element: On Vacation with a cup of coffee and a paper |
I didn't have those final conversations with my dad. I didn't have the chance to ask him some questions. He didn't have the time to tell me things. I didn't give him hugs and kisses knowing it would be one of the last times I could have that. I want that for my loved ones. That chance.
I realize I am doing all of this now. I am already living every day like its my last, but there is something sadly beautiful about having these moments knowing that it is really and truly the last moment. I want that knowledge. Even though I'm living with cancer now, there is always hope on some level. There is always disbelief. That won't be me. I am not Elizabeth Edwards. Until you have The Conversation with your doctor, it doesn't become real. I want the reality of that for a couple of months before the actual end so I can have really good conversations and memories.
I also think that having these last moments together will help my loved ones after I am gone to remember those final weeks and months fondly. There should be laughter in there. There will be tears too, but I also want laughter and good memories. I want final wonderful conversations. I don't want my final moments to be all about me in bed exhausted. I want the Big Man, Mommy, Brothers, and my Girls to remember this time with just some tinge of fondness and peace.
I want to be clear here, I don't want to die. I want to grow old with the Big Man, and I plan to! Growing old with my hubby is my deepest desire. I feel that desire deep down in my bones and in the deepest part of my heart, but I also think that how you leave this world is just as important as how you came into it. For some reason though, no one wants to talk about death. I think if we started a conversation about it, it wouldn't be nearly as scary as you all expect. I want my death to be somewhat beautiful. Even if cancer rages through my body and leaves me a shell of my normal self, my soul will still be there. My character will shine through. The way I look into your eyes, the way I hold your hand, and the way I choose to die. All of this will tell you that my soul lives on, even after I take my last breath. My soul will be here.
Expectant mothers spend months planning for the big day- c-section vs. natural childbirth, even 'water birth', midwife vs. obstetrician, blue, pink, purple or green nursery, crib or basinette, boy vs. girl, jack vs. john, abigail vs. sophia? Women also spend every moment starting in pre-school planning our wedding day. Beach vs. church, band vs. dj, the dress! Men, you do it too. You plan becoming professional athletes or firefighters. We plan so much of our lives. I don't understand why we don't also plan our last days together, what could be more important?
Whenever it happens, be it tomorrow, when I'm 31, 81 or 101, I want my funeral to be a great send off. If I spent months planning my wedding, why wouldn't I do the same for my funeral? My wedding day was the best day of my life full of euphoric joy and the overwhelming feeling that, for just that one moment, all was right in the world. My personality and the Big Man's personality shone through on that day. We had very personal touches throughout. Why settle for a sub-par funeral? I want fabulousness. I want my funeral to reflect my personality. I want it to be comforting to my friends and family. I want to send a little message of comfort. I want people to realize that I'm still here. Even after I'm gone, I'll still be there. This is my Great Goodbye. How can you not take some time to plan that? It is so incredibly important.
And so, I've spent a lot of time in thought about how I want to live my life, but also how I want to leave it. I have read the Bible to find appropriate readings that offer hope and comfort and my perspective on the life I've led. I've found hymns that I love that bring me comfort and that make me cry.
But even more than the process of dying, I'm also not afraid of death itself. I am not afraid of the unknown. I have a deep belief in God and I deeply believe that my father is still with me, on some level that I can not comprehend. How can I have this deep faith and belief? Especially since my life has been so very difficult, I of all people have every reason not to believe. I have every reason to get angry with God and turn from all of that "hocus pocus." I have this deep faith for three reasons: I have experienced moments when I know deeply that my father is still with me, I have been humbled by my own power through this journey, and I have found that certain people enter my life at exactly the right moment and I believe those people are my little angels. My fight has also, as I mentioned on Thanksgiving, humbled me to the sheer hugeness and beauty of this world. How can one not believe in God when you see a baby being born?
I believe that people are scared of death because we don't know what happens afterward. I was scared to death at the beginning of this journey about the fear of recurrence. But then one day my cancer returned, and you know what? I handled it. I dealt. The scariest thing happened and it wasn't so scary after all. It was devestating, but with the right little angels by my side, I got through. I deeply believe that death will be the same way. It is something beyond my comprehension, which is why it is scary. If you can not imagine something or understand something it is immediately scary. But if I can handle this crazy life I've been given, I can certainly handle death with beauty and grace.
And so, Mrs. Edwards, I feel deeply for you today. I hope that your family has the time they need and deserve with you. I hope you have those important conversations with your little ones. I am glad you are at home, but I am so sorry that your family has to face this. I hope your faith brings you peace and hope in the midst of this sorrow. I hope for you what I hope for myself, I hope you find peace and love in these coming weeks, and not suffering. I know you will face this with the same dignity and grace that you have faced all of your life's trials. You have, throughout your life facing unimaginable tragedy, always been a lady. You will always be a model for me.
Friday, November 5, 2010
Scan Results & their aftermath
Somehow, we are already into November. It is freezing cold and raining here in Boston. My friends are already decorating for Christmas. I have the Thanksgiving grocery list ready to go. The saddest thing and the most surprising thing about life is how quickly it passes us by!
With November comes scan time. It's been three months since my last set of CT scans in August. Last week I spent my usual day at the hospital getting poked, prodded and scanned. Except this time, I came well prepared. After my first post about the horrors of drinking fruit-punch-flavored-contrast, a few of my faithful readers sent along some goodies to help me through my difficult time!
Molly sent along a "diamond" studded pink flask, which I not only brought with me to the CT scan, but I also keep in the zippered pocket of my purse at all times, because a girl never knows when she might need a "diamond" studded pink flask! (Thank you, thank you, thank you, Molly!)
I took a picture of myself holding said flask, but the picture didn't quite do justice to the diamonds and the beautiful star detail on the front, so enjoy this close up picture instead!
So I came armed to this CT scan with a smile and my flask and with complete confidence that my cancer would continue shrinking.
Drum roll please......
The cancer is still shrinking! I'm still winning!
I think we all know we have the pink flask to thank for this success!
In fact, the TDM1 has worked so incredibly well that the larger of the tumors in my liver has shrunk 22% since we started this stuff 9 months ago! -22% in 9 months, that to me is the definition of a silver bullet!
So the Big Man, Momma, and I went out for a delicious Italian meal to celebrate. It was so wonderful to see Momma and the Big Man so relieved. I don't think we truly understand the heavy weight that these scans carry. We have been doing the scan thing every three months for six years, so we really have it down to a science and I think we deal quite well given the high level of anxiety these moments of truth bring.
That said, the aftermath is pure giddiness. Big Man and I were literally running around in circles in our little 900 square foot condo with joy. We danced together in the living room. We giggled while doing the dishes. Every interaction after this good news took on a party atmosphere. We were fine before. We were doing fine dealing with the unknown, but we had no idea just how much happier and in love we could be without this giant cancer burden. Life beating cancer is so much better than life spent on the losing side. We know both sides all too well.
But now, two days later, I am also thinking long and hard about this new reality. I am thinking about just how young we are. I am thinking about the very real possibility that I could "beat this" cancer. This silver bullet is a miracle. I tolerate the TDM1 really well: getting out of bed gets pretty tough after the infusions, my back aches like I have a constant flu, but beyond those very bearable side effects, I am living fully and I am kicking cancer butt while doing it.
So the question becomes, what is my long term reality going to look like, for reals?
For years my situation has been so touch and go, I have only been looking just one baby step ahead. I've only allowed myself to look a few months into the future. With this TDM1, I'm slowly, with baby steps, allowing myself to make bigger plans. I'm noticing that, subconsciously, I am booking flights months in advance, I am dreaming of career plans, puppy plans, baby plans, house with a yard plans, life plans. Like any 27 year old, the world might become my oyster.
Yet, I am very realistic about my expectations. Beating cancer in my world is very different from beating cancer in any other patient's world. With Stage 4, no doctor will take me off treatment. No doctor will stop scanning me. The appointments, the drugs, the side effects, those will remain the same. How is that going to color my life?
Can we get a four bedroom house with a yard and a garage, all of which requires serious upkeep? I can handle our two bedroom condo. I could maybe handle an additional bedroom, but with the fatigue I have.... Could I handle multiple floors? Living rooms AND family rooms? A real live dining room that is separate from everything else? An eat in kitchen? What if I need further surgeries and I'm laid up for weeks on end? Mamma has been so incredibly helpful for six years, but she too will get tired of flying, and staying, and cleaning when I am too tired. She is thrown into the role of a mother who has a child needing long term care! She needs a break too. Big Man helps, but he works too. How can I be constantly fatigued and still justify this big house in my dreams that someone else needs to manage?
And the children who will fill that house with love. Don't even get me started with those beautiful red-headed children. Can I bring a baby to chemo? When I walk into the hospital, everyone knows my name: the valet team, the security guards, the lady who stamps my parking ticket, the front desk staff. Hundreds of people who care for thousands of people every week, they know me out of every other patient because I've been coming week after week, year after year. Every other cancer patient finishes treatment in a normal time frame. What if I live 20 years doing this? Will my child's first word be "doctor" ??
But I'm ahead of myself here. Let's talk about even getting pregnant in the midst of this! (I've covered my options and that's a post for another day, but I still must raise the point) Can you imagine? And if my fertility options don't work, would adoption be a possibility? Would anyone in her right mind give a baby to a woman with metastatic breast cancer?
So, I guess at a moment when I should most feel happy, I am also nervous. Being healthy makes me nervous. Wow, that's huge!
I know this is silly of me to worry about. I have dealt with such larger problems than, god forbid, living a long life, but I am a type A woman. Planning is what we do best! Planning for a life with a chronic illness, a life facing a terminal illness, it is a scary world I live in.
For years I have been the 'young person with cancer.' The 'woman' who is still actually just a child. A child trying to be really brave and wear her big girl pants and put on this persona. The 'woman' who still relies on mom. The patient who indulges herself after chemo with a mani/pedi and some serious shopping. What happens when I grow up...with metastatic breast cancer?
Young women diagnosed with breast cancer worry about "fertility after breast cancer" and "careers after breast cancer" what about "fertility during breast cancer?" Forever and ever and ever with breast cancer?
I've made it this far. Most doctors never thought I'd make it five years. I'm going on six and things are moving in the right direction. Take that statistics!
But...I've made it this far and I still want to live the dream. How do we make that happen?
Heavy stuff for a Friday night, any advice is welcome!
With November comes scan time. It's been three months since my last set of CT scans in August. Last week I spent my usual day at the hospital getting poked, prodded and scanned. Except this time, I came well prepared. After my first post about the horrors of drinking fruit-punch-flavored-contrast, a few of my faithful readers sent along some goodies to help me through my difficult time!
Molly sent along a "diamond" studded pink flask, which I not only brought with me to the CT scan, but I also keep in the zippered pocket of my purse at all times, because a girl never knows when she might need a "diamond" studded pink flask! (Thank you, thank you, thank you, Molly!)
 | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| In the words of Ina Garten, the Barefoot Contessa, "How gorgeous is that?" |
So I came armed to this CT scan with a smile and my flask and with complete confidence that my cancer would continue shrinking.
Drum roll please......
The cancer is still shrinking! I'm still winning!
I think we all know we have the pink flask to thank for this success!
In fact, the TDM1 has worked so incredibly well that the larger of the tumors in my liver has shrunk 22% since we started this stuff 9 months ago! -22% in 9 months, that to me is the definition of a silver bullet!
So the Big Man, Momma, and I went out for a delicious Italian meal to celebrate. It was so wonderful to see Momma and the Big Man so relieved. I don't think we truly understand the heavy weight that these scans carry. We have been doing the scan thing every three months for six years, so we really have it down to a science and I think we deal quite well given the high level of anxiety these moments of truth bring.
That said, the aftermath is pure giddiness. Big Man and I were literally running around in circles in our little 900 square foot condo with joy. We danced together in the living room. We giggled while doing the dishes. Every interaction after this good news took on a party atmosphere. We were fine before. We were doing fine dealing with the unknown, but we had no idea just how much happier and in love we could be without this giant cancer burden. Life beating cancer is so much better than life spent on the losing side. We know both sides all too well.
But now, two days later, I am also thinking long and hard about this new reality. I am thinking about just how young we are. I am thinking about the very real possibility that I could "beat this" cancer. This silver bullet is a miracle. I tolerate the TDM1 really well: getting out of bed gets pretty tough after the infusions, my back aches like I have a constant flu, but beyond those very bearable side effects, I am living fully and I am kicking cancer butt while doing it.
So the question becomes, what is my long term reality going to look like, for reals?
For years my situation has been so touch and go, I have only been looking just one baby step ahead. I've only allowed myself to look a few months into the future. With this TDM1, I'm slowly, with baby steps, allowing myself to make bigger plans. I'm noticing that, subconsciously, I am booking flights months in advance, I am dreaming of career plans, puppy plans, baby plans, house with a yard plans, life plans. Like any 27 year old, the world might become my oyster.
Yet, I am very realistic about my expectations. Beating cancer in my world is very different from beating cancer in any other patient's world. With Stage 4, no doctor will take me off treatment. No doctor will stop scanning me. The appointments, the drugs, the side effects, those will remain the same. How is that going to color my life?
Can we get a four bedroom house with a yard and a garage, all of which requires serious upkeep? I can handle our two bedroom condo. I could maybe handle an additional bedroom, but with the fatigue I have.... Could I handle multiple floors? Living rooms AND family rooms? A real live dining room that is separate from everything else? An eat in kitchen? What if I need further surgeries and I'm laid up for weeks on end? Mamma has been so incredibly helpful for six years, but she too will get tired of flying, and staying, and cleaning when I am too tired. She is thrown into the role of a mother who has a child needing long term care! She needs a break too. Big Man helps, but he works too. How can I be constantly fatigued and still justify this big house in my dreams that someone else needs to manage?
And the children who will fill that house with love. Don't even get me started with those beautiful red-headed children. Can I bring a baby to chemo? When I walk into the hospital, everyone knows my name: the valet team, the security guards, the lady who stamps my parking ticket, the front desk staff. Hundreds of people who care for thousands of people every week, they know me out of every other patient because I've been coming week after week, year after year. Every other cancer patient finishes treatment in a normal time frame. What if I live 20 years doing this? Will my child's first word be "doctor" ??
But I'm ahead of myself here. Let's talk about even getting pregnant in the midst of this! (I've covered my options and that's a post for another day, but I still must raise the point) Can you imagine? And if my fertility options don't work, would adoption be a possibility? Would anyone in her right mind give a baby to a woman with metastatic breast cancer?
So, I guess at a moment when I should most feel happy, I am also nervous. Being healthy makes me nervous. Wow, that's huge!
I know this is silly of me to worry about. I have dealt with such larger problems than, god forbid, living a long life, but I am a type A woman. Planning is what we do best! Planning for a life with a chronic illness, a life facing a terminal illness, it is a scary world I live in.
 | |
| Christmas 1989: From a young age, I wanted to be a "Big Girl" |
Young women diagnosed with breast cancer worry about "fertility after breast cancer" and "careers after breast cancer" what about "fertility during breast cancer?" Forever and ever and ever with breast cancer?
I've made it this far. Most doctors never thought I'd make it five years. I'm going on six and things are moving in the right direction. Take that statistics!
But...I've made it this far and I still want to live the dream. How do we make that happen?
Heavy stuff for a Friday night, any advice is welcome!
Monday, September 13, 2010
Fresh Fall Start
Here in Boston, the weather has gotten suddenly chilly and the days are getting noticeably shorter. For the Big Man, a high school English teacher, summer is officially over. It is a start to a whole new year. In our household, Labor Day weekend seems like a much more noteworthy holiday than even the hoopla of New Year's Eve.
In my metastatic breast cancer world though, I follow a different calendar. I start a new "year" every three months. Believe it or not, my past three month "year" has already come to a close! It's been only four blog posts, one fast summer, and two glorious holiday weekends since my last set of scans. In June, I celebrated my first real out and out victory in my fight against cancer. For years the words "no change" or "stable" were actually good terms. I hadn't realized what limbo I was living. For five long years, the cancer never actually shrunk. It either grew or it stayed the same. The status quo was a victory. I was simply keeping the beast at bay, I had never before sent it running for the hills.
Then my little silver bullet came along. In June, for the first time, with the help of this TDM1-GDC clinical trial I started winning!
But last week, I was facing a new question, a new challenge. If you remember, when I first started the clinical trial I was taking both TDM1 and oral chemo pills called GDC. That combination almost killed me. My platelet count fell to dangerous levels. I was breaking out with "spontaneous bruising", which might sound tame in medical terms, but was in reality the scariest thing I've ever been through. I also couldn't get out of bed because every step, every breath, every movement hurt from the inside out. So I threw in the towel and I was devastated. But when I got the good June scan results, my devastation turned to hope.
Last week, as I went in for scans and results, I was again filled with dread. I faced a new question: without the GDC pills, would the cancer shrink? Would TDM1 alone be enough to keep this cancer running for dear life (I think that phrase takes on a new, opposite meaning in this case, don't you??!)
Well, my friends, the verdict is in:
I am kicking cancer's ass!
In the past three months, the TDM1 has shrunk the original tumor in my liver visibly. I quote from the Radiology Report:
"There is an ill-defined mass in segment 6 of the liver which is slightly decreased compared to prior examination and measures 1.4 X 1.1 cm. "
But here's the best part...drumroll please....the scan doesn't even mention the second, smaller, newer liver "lesion" that showed up in April and started this whole clinical trial drama!
That vile, nasty, evil thing that sent me to the hospital for a biopsy that hurt like hell, it just disappeared so quickly and so quietly. That liver lesion arrived with so much pain and hoopla, and then it disappeared without even a peep! Take THAT cancer!
The TDM1 is working. I love my little silver bullet.
This September is truly a fresh start for me as well as for my husband. This morning, I drove past an elementary school on my way to Starbucks. I saw and heard dozens of adorable children with shiny new backpacks, new haircuts, vivid white polo shirts, and smiles of pure joy race to visit with classmates.
As I drove past, I felt a kinship with those elementary schoolers, not because I was reliving my own childhood, but more because I share in their joy. This week, every phone conversation I have, every time I see a friend, every morning when I see the Big Man, I am filled with unbridled joy and the excited flip flop in my tummy that comes with new beginnings.
Today is a shiny, new backpack kind of day! Who knows what sort of terrible challenges lie ahead for the rest of this year, but today as I embark on a new chapter, I am fresh, well rested, healthy and new. My liver is shiny and clean and the world is my oyster.
I hope that all of you can take a bit of my energy today and face this new week with some ounce of unbridled joy and optimism. To see that sort of unconditional trust, hope, and love in an adult is an unusual gift. I think if we faced each morning like a child the world would be a better place, and our day to day lives would feel just a little less painful.
I want to say one last final thought about my second liver spot. That evil creature kept my entire family and all of you, my blog friends, awake at night with fear, but we must also remember, it also united us all in prayer and in hope, and, now, our prayers have been answered. That's the beauty of life, the same thing that hurts us more deeply than we can imagine, also opens us up to more joy than could have been enjoyed before. A rollercoaster is only as thrilling as its scariest hills and loops.
Thank you all for helping me and encouraging me along this journey. I cherish all of your comments and support more than you can ever know. I deeply believe I wouldn't have made it to this moment without you.
In my metastatic breast cancer world though, I follow a different calendar. I start a new "year" every three months. Believe it or not, my past three month "year" has already come to a close! It's been only four blog posts, one fast summer, and two glorious holiday weekends since my last set of scans. In June, I celebrated my first real out and out victory in my fight against cancer. For years the words "no change" or "stable" were actually good terms. I hadn't realized what limbo I was living. For five long years, the cancer never actually shrunk. It either grew or it stayed the same. The status quo was a victory. I was simply keeping the beast at bay, I had never before sent it running for the hills.
Then my little silver bullet came along. In June, for the first time, with the help of this TDM1-GDC clinical trial I started winning!
But last week, I was facing a new question, a new challenge. If you remember, when I first started the clinical trial I was taking both TDM1 and oral chemo pills called GDC. That combination almost killed me. My platelet count fell to dangerous levels. I was breaking out with "spontaneous bruising", which might sound tame in medical terms, but was in reality the scariest thing I've ever been through. I also couldn't get out of bed because every step, every breath, every movement hurt from the inside out. So I threw in the towel and I was devastated. But when I got the good June scan results, my devastation turned to hope.
Last week, as I went in for scans and results, I was again filled with dread. I faced a new question: without the GDC pills, would the cancer shrink? Would TDM1 alone be enough to keep this cancer running for dear life (I think that phrase takes on a new, opposite meaning in this case, don't you??!)
Well, my friends, the verdict is in:
I am kicking cancer's ass!
In the past three months, the TDM1 has shrunk the original tumor in my liver visibly. I quote from the Radiology Report:
"There is an ill-defined mass in segment 6 of the liver which is slightly decreased compared to prior examination and measures 1.4 X 1.1 cm. "
But here's the best part...drumroll please....the scan doesn't even mention the second, smaller, newer liver "lesion" that showed up in April and started this whole clinical trial drama!
That vile, nasty, evil thing that sent me to the hospital for a biopsy that hurt like hell, it just disappeared so quickly and so quietly. That liver lesion arrived with so much pain and hoopla, and then it disappeared without even a peep! Take THAT cancer!
The TDM1 is working. I love my little silver bullet.
 |
| Me heading off to pre-school, I guess at that age you didn't need a backpack? I don't know what I love more, my pig tales or my blue big girl shorts! |
As I drove past, I felt a kinship with those elementary schoolers, not because I was reliving my own childhood, but more because I share in their joy. This week, every phone conversation I have, every time I see a friend, every morning when I see the Big Man, I am filled with unbridled joy and the excited flip flop in my tummy that comes with new beginnings.
Today is a shiny, new backpack kind of day! Who knows what sort of terrible challenges lie ahead for the rest of this year, but today as I embark on a new chapter, I am fresh, well rested, healthy and new. My liver is shiny and clean and the world is my oyster.
I hope that all of you can take a bit of my energy today and face this new week with some ounce of unbridled joy and optimism. To see that sort of unconditional trust, hope, and love in an adult is an unusual gift. I think if we faced each morning like a child the world would be a better place, and our day to day lives would feel just a little less painful.
I want to say one last final thought about my second liver spot. That evil creature kept my entire family and all of you, my blog friends, awake at night with fear, but we must also remember, it also united us all in prayer and in hope, and, now, our prayers have been answered. That's the beauty of life, the same thing that hurts us more deeply than we can imagine, also opens us up to more joy than could have been enjoyed before. A rollercoaster is only as thrilling as its scariest hills and loops.
Thank you all for helping me and encouraging me along this journey. I cherish all of your comments and support more than you can ever know. I deeply believe I wouldn't have made it to this moment without you.
Wednesday, August 11, 2010
My Girls
I know I have waited too long to post because people have started asking, in hushed voices, "Is everything OK?" I apologize for the extended blog silence. Yes, everything is OK. I am here, I am happy, and nothing major has happened with my health.
Everything is actually fabulous! I have just been joyfully living life in-between scans. This blog is a wonderful tool for me, but it can also be quite emotional to revisit feelings and thoughts. For the past few weeks, I found I couldn't write anything. I just wanted to not revisit any cancer-fighting feelings. I just wanted to be "normal". The next set of scans are already coming up on September 1st, but for the past three weeks I have been happy, relatively "healthy", and I have taken advantage of that time to visit my best friends.
From Boston to New York, New York to Baltimore, back to Boston, and then on to Chicago, I have been jet setting from city to city for birthdays, beach trips, and weddings. Basically, I have been enjoying life as all 27 year olds should! That time with My Girls has made me want to write a little ode. An Ode to My Girls. So I am breaking my silence with a love letter of sorts!
Since my diagnosis, I feel as though I am living in that movie "Groundhog Day." I am forever 21 years old. Whenever doctors talk about me to their colleagues they say something along the lines of "caucasian otherwise healthy female diagnosed with metastatic breast cancer at 21 years...". I also revisit the age and the big diagnosis often when I speak with survivors or at high schools and colleges or with the media about my diagnosis.
Since I am always stuck at 21, and since I now celebrate good scan results or cancer-versaries, my birthday has kind of taken a back seat. Often when I make big plans for a birthday trip or birthday party or birthday dinner, life has intervened. My 22nd birthday I was so frail and sick from starting chemo, I just didn't know if I could do much of anything. For my 25th birthday, my life had been thrown upside down just a few weeks prior with the sudden death of my father. When I turned 26, I was going every week for chemo treatment and my blood counts were dropping so I was pretty much celebrating in bed!
Long story short, since the big 2-1, many birthdays could have passed without my noticing! But...I say "could have" because I am blessed with the best group of girlfriends this side of heaven.
My Girls never let an opportunity for celebration pass without the appropriate amount of fun! My Girls always remember, and they always surprise me with plans. For example, I turned 27 in July (Happy Belated Birthday to me) and they set up a Birthday Rodeo complete with live music, BBQ, cowboy hats and a Dave Matthews Concert!
My Girls are family. They know me better than I know myself. They know me so well that they know what's best for me! When I am spewing objections about how everyday seems to be the Bridget Show. When I refuse to plan yet another special day to celebrate my life. When I object to visitors in the hospital claiming all I want to do was sleep, my girls show up with People Magazine in tow and they make me feel my age, which is a gift beyond anything I can ever give in return. For those few precious moments when I am giggling with My Girls, I am able to forget all of the cares and worries and responsibilities. Instead, I can just belly laugh.
They are not afraid when I turn green with nausea. It is not below them to spend an entire afternoon and evening snuggling in bed with me because I am too tired to go out. When I am willing to go out, they realize I can't drink a ton and so we do something special like bowling, riding bumper cars, or seeing a concert.
These women have taught me that thoughtfulness isn't showering someone with gifts. Friendship doesn't mean spending an exorbitant amount of money to spend time together at the latest and greatest hot spot. We don't even have to go out for a meal to have a good time.
True thoughtfulness, true friendship just means being there. My Girls don't expect me to "talk about it". There is no pressure. We pick up exactly where we left off, and, no matter what tragedies or huge changes have happened to all of us, we can always find one another to forget and to be surrounded with laughter. We laugh until we cry. But when the crying comes, and it does come, for all of us not just for the Sickie, we all know we are surrounded: surrounded with warm hands and long arms, shared tears and kisses.
I am blessed with so many true friends and with so much support. I don't know what I did to deserve it or how I got so lucky. As a child, I always bemoaned my lack of friends. I was always the kid at recess without any friends. Then one day, I woke up with this group of fabulous, successful, and funny young women. Thank you, ladies, for supporting me when it is often you who needs support. Thank you for helping me feel normal and for keeping me sane, but most of all thank you for keeping me real. Living with breast cancer can make me narcissistic or keep me from seeing the forest for the trees. Spending time with each of you keeps me from getting swallowed by the big black hole that is "living with cancer." You help me to realize that all I'm really doing is living.
Everything is actually fabulous! I have just been joyfully living life in-between scans. This blog is a wonderful tool for me, but it can also be quite emotional to revisit feelings and thoughts. For the past few weeks, I found I couldn't write anything. I just wanted to not revisit any cancer-fighting feelings. I just wanted to be "normal". The next set of scans are already coming up on September 1st, but for the past three weeks I have been happy, relatively "healthy", and I have taken advantage of that time to visit my best friends.
From Boston to New York, New York to Baltimore, back to Boston, and then on to Chicago, I have been jet setting from city to city for birthdays, beach trips, and weddings. Basically, I have been enjoying life as all 27 year olds should! That time with My Girls has made me want to write a little ode. An Ode to My Girls. So I am breaking my silence with a love letter of sorts!
Since my diagnosis, I feel as though I am living in that movie "Groundhog Day." I am forever 21 years old. Whenever doctors talk about me to their colleagues they say something along the lines of "caucasian otherwise healthy female diagnosed with metastatic breast cancer at 21 years...". I also revisit the age and the big diagnosis often when I speak with survivors or at high schools and colleges or with the media about my diagnosis.
Since I am always stuck at 21, and since I now celebrate good scan results or cancer-versaries, my birthday has kind of taken a back seat. Often when I make big plans for a birthday trip or birthday party or birthday dinner, life has intervened. My 22nd birthday I was so frail and sick from starting chemo, I just didn't know if I could do much of anything. For my 25th birthday, my life had been thrown upside down just a few weeks prior with the sudden death of my father. When I turned 26, I was going every week for chemo treatment and my blood counts were dropping so I was pretty much celebrating in bed!
My Girls never let an opportunity for celebration pass without the appropriate amount of fun! My Girls always remember, and they always surprise me with plans. For example, I turned 27 in July (Happy Belated Birthday to me) and they set up a Birthday Rodeo complete with live music, BBQ, cowboy hats and a Dave Matthews Concert!
My Girls are family. They know me better than I know myself. They know me so well that they know what's best for me! When I am spewing objections about how everyday seems to be the Bridget Show. When I refuse to plan yet another special day to celebrate my life. When I object to visitors in the hospital claiming all I want to do was sleep, my girls show up with People Magazine in tow and they make me feel my age, which is a gift beyond anything I can ever give in return. For those few precious moments when I am giggling with My Girls, I am able to forget all of the cares and worries and responsibilities. Instead, I can just belly laugh.
They are not afraid when I turn green with nausea. It is not below them to spend an entire afternoon and evening snuggling in bed with me because I am too tired to go out. When I am willing to go out, they realize I can't drink a ton and so we do something special like bowling, riding bumper cars, or seeing a concert.
These women have taught me that thoughtfulness isn't showering someone with gifts. Friendship doesn't mean spending an exorbitant amount of money to spend time together at the latest and greatest hot spot. We don't even have to go out for a meal to have a good time.
True thoughtfulness, true friendship just means being there. My Girls don't expect me to "talk about it". There is no pressure. We pick up exactly where we left off, and, no matter what tragedies or huge changes have happened to all of us, we can always find one another to forget and to be surrounded with laughter. We laugh until we cry. But when the crying comes, and it does come, for all of us not just for the Sickie, we all know we are surrounded: surrounded with warm hands and long arms, shared tears and kisses.
Friday, July 9, 2010
Enjoy the View
Another weekend is upon us. I don't know how time has flown by so quickly!
My Fourth of July holiday was fabulous; everything we expected it to be and more. The Mount Washington Resort is spectacular, although I think if we went back we would choose not to go on the Fourth of July. It was slightly too busy on the Fourth. The Resort had arranged for some reenactments of the Revolutionary War and the Gettysburg address. Driving up to the resort, we thought our car was getting hit by a bevy of errant golf balls from the nearby course, it wasn't until we turned a corner that we saw men in uniform and on horseback setting off fake cannon fire that we realized the banging sounds we heard were the blanks from the cannon! My little Jetta made it back from New Hampshire unscathed. While sitting on rocking chairs with a cup of coffee looking out at Mount Washington, you truly think that you could be the only person on the planet. Seeing children in the other room sitting on Abraham Lincoln's lap taking pictures takes away a bit of the wonder of the mountains. But other than the reenactments, the trip was perfect!
We could have stayed there forever. Every morning coffee and juice was delivered to our door so we could stay in bed as long as possible. The food was out of this world and the service was impeccable. No fewer than four people helped us out of the car and with our luggage. Our waitress was adorable and attentive and we had the same waitress and busboy the whole weekend. We spent a day at the spa, sitting together in robes with tea, and saunas, and whirlpools, getting a massage and a facial. We wandered the grounds together hand in hand. It was exactly what we needed.
It is actually not until those moments of total and complete relaxation that the enormity of our situation can be truly understood. When we are in the moment and in a doctor's office or waiting room, we are just trying to make it through the day. The stress we carry day in and day out can be so overwhelming that it is actually incapacitating. The stress actually takes away our ability to look at our situation as a whole. I believe that at those most crucial moments, like scan times, if we were to take a step back and truly comprehend the amount of stress on our shoulders, we would crumble.
It wasn't until we had been at the resort for two days, after the massage, when my husband and I were sitting quietly holding hands and staring at the majestic Appalachians that it washed over us. We looked at each other and had a new found respect for our relationship. We had made it. We made it through another trial, another roadblock, another test, and we have come out the other end and still found each other. We have found this magical place.
But we didn't just sit around and get pampered. We also explored the mountains. At a friend's suggestion (Thank you, Molly!) we took an afternoon hike up Mount Willard. Big Man was adorable. He stopped after crossing any rock or little dribble of water or slight incline and offered me his hand. He looked afraid that I would break. I just plunged forward, head down, eyes wide open, and focused on putting one foot in front of the other. Although we ended up at 2,800 feet when we reached the summit, the hike was only a mile and a half each way, but it was quite steep. That said, when we reached the summit, the view was absolutely breathtaking!
I was suddenly giddy! Can you believe it, people? This time last month I couldn't get out of bed. Just two weeks ago, my platelet count was at 15,000 and I needed blood transfusions. I couldn't walk from my bed to the kitchen for a glass of water let alone hike up a mountain! I wanted to do it again. I wanted to do Mount Washington! I could totally do an eight hour hike up to the top of Mount Washington, so what that its the highest peak in New England. I'm totally healthy! When we got to the bottom, I was talking about hiking the whole Appalachian Trail!
Big Man laughed, shook his head, kissed my forehead, grabbed my hand and said, "Let's go put you to bed!"
Big Man knows me too well. He knows this journey too well. I fell asleep in the middle of fireworks.
I could barely move the next day. I may be handling it well, but the silver bullet is still chemotherapy. But one day, one day, that silly little Appalachian Trail won't know what hit it! I'm scheduled to go in for my next TDM1 infusion on July 21st, but today, we are triumphant! Today our heads are clear and we can climb any mountain. It's amazing what summer vacations can do.
Happy Friday, everyone! Get out there and climb your own personal mountains this weekend.
My Fourth of July holiday was fabulous; everything we expected it to be and more. The Mount Washington Resort is spectacular, although I think if we went back we would choose not to go on the Fourth of July. It was slightly too busy on the Fourth. The Resort had arranged for some reenactments of the Revolutionary War and the Gettysburg address. Driving up to the resort, we thought our car was getting hit by a bevy of errant golf balls from the nearby course, it wasn't until we turned a corner that we saw men in uniform and on horseback setting off fake cannon fire that we realized the banging sounds we heard were the blanks from the cannon! My little Jetta made it back from New Hampshire unscathed. While sitting on rocking chairs with a cup of coffee looking out at Mount Washington, you truly think that you could be the only person on the planet. Seeing children in the other room sitting on Abraham Lincoln's lap taking pictures takes away a bit of the wonder of the mountains. But other than the reenactments, the trip was perfect!
We could have stayed there forever. Every morning coffee and juice was delivered to our door so we could stay in bed as long as possible. The food was out of this world and the service was impeccable. No fewer than four people helped us out of the car and with our luggage. Our waitress was adorable and attentive and we had the same waitress and busboy the whole weekend. We spent a day at the spa, sitting together in robes with tea, and saunas, and whirlpools, getting a massage and a facial. We wandered the grounds together hand in hand. It was exactly what we needed.
It is actually not until those moments of total and complete relaxation that the enormity of our situation can be truly understood. When we are in the moment and in a doctor's office or waiting room, we are just trying to make it through the day. The stress we carry day in and day out can be so overwhelming that it is actually incapacitating. The stress actually takes away our ability to look at our situation as a whole. I believe that at those most crucial moments, like scan times, if we were to take a step back and truly comprehend the amount of stress on our shoulders, we would crumble.
It wasn't until we had been at the resort for two days, after the massage, when my husband and I were sitting quietly holding hands and staring at the majestic Appalachians that it washed over us. We looked at each other and had a new found respect for our relationship. We had made it. We made it through another trial, another roadblock, another test, and we have come out the other end and still found each other. We have found this magical place.
I was suddenly giddy! Can you believe it, people? This time last month I couldn't get out of bed. Just two weeks ago, my platelet count was at 15,000 and I needed blood transfusions. I couldn't walk from my bed to the kitchen for a glass of water let alone hike up a mountain! I wanted to do it again. I wanted to do Mount Washington! I could totally do an eight hour hike up to the top of Mount Washington, so what that its the highest peak in New England. I'm totally healthy! When we got to the bottom, I was talking about hiking the whole Appalachian Trail!
Big Man laughed, shook his head, kissed my forehead, grabbed my hand and said, "Let's go put you to bed!"
Big Man knows me too well. He knows this journey too well. I fell asleep in the middle of fireworks.
I could barely move the next day. I may be handling it well, but the silver bullet is still chemotherapy. But one day, one day, that silly little Appalachian Trail won't know what hit it! I'm scheduled to go in for my next TDM1 infusion on July 21st, but today, we are triumphant! Today our heads are clear and we can climb any mountain. It's amazing what summer vacations can do.
Happy Friday, everyone! Get out there and climb your own personal mountains this weekend.
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